TSH 29 - your advice?

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Lenascrivente
Lenascrivente Posts: 177 Member
edited October 2017 in Social Groups
Hi there.
I had decided to start CICO on MFP on September 1st but my health went downhill: fever, no period, extremely tired, you name it.
Eventually I was re-tested and my TSH was up to 29 and anti-bodies above 1000.
I was switched to liquid T4 and will be tested again (6 weeks) tomorrow.

I decided to postpone MFP until I get my blood test right because it is frustrating to keep trying, restrict, and crash after every gym session to discover that I can't loose a pound while on 1300 a day.
I feel bad for having postponed and at the same time feel I need to get the hormones right before I try.
I have tried too many times and feel discouraged by the observation that CICO is not working with me now. Doctor says it's the hormones but I don't disclose this to people as it really sounds like the stereotype 'I'm fat because of thyroid'. So frustrating.
Can you give me advice? What would you do if you were in my position?
Thanks
Lena

Replies

  • Psychgrrl
    Psychgrrl Posts: 3,177 Member
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    Holy *kitten*--that's high! What about Free T3 and Free T4? Does your doc run a full thyroid panel? Your body should convert T4 to T3, but some of us don't do a good job of that. Mine doesn't--I also supplement T3.

    What kind of deficit were you at? What kind of diet--anything in particular? Maybe the deficit was too steep. If you went low carb, you could ahve had "keto flu." Make sure your logging is tight--weigh all solid foods (including pre-packaged foods like frozen dinners, eggs, slices of bread and cheese, etc) and use a measuring cups for all liquids. Be sure you're using the correct entry in the database. products change labeling from time to time and even the "verified" entries (green check mark) can be incorrect. Compare to the packaging. Or the USDA databse. https://ndb.nal.usda.gov/ndb/search/list I also like this one for nutrition info: nutritiondata.self.com/

    Have you had vitamin D and iron checked? They're not connected to thyroid function, but can cause some of the crash and burn you described. Also simple blood tests your doc could order.

    My endo showed me some recent research and suggested I try eating one Brazil nut a day for the selenium. My diet was not rich in it (he went through my MFP diary) and it is not usually contained in a multi-vitamin. This is not something where more is better, selenium is a heavy metal and too much can be dangerous. My levels were stable, though, talk to your doctor before introducing anything new like that. You want to make sure you have the right level of meds first and foremost. It takes time and patience.

    Hang in there! :heart:
  • CSARdiver
    CSARdiver Posts: 6,252 Member
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    Are you on both T3 and T4 supplementation? Take your prescriptions as directed and ensure you hydrate as appropriate. This takes time and your body won't react until around 4-6 weeks to the change in prescription.

    Did you get a full panel including TSH, fT3, fT4, and rT3?

    What did MFP give you to maintain a deficit?

    @Psychgrrl provided some excellent advice. Whatever you do dip your toes in slowly and do not make drastic changes. This never works out in the long term. Make small changes, which have a dramatic impact over time.

    How much do you have to lose? This is an important factor in this.
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    I believe the OP is living in the UK as EN seems to indicate, English, you must be joking testing t3 is not permitted here! NICE the advisory body telling the NHS where best to spend it decreasing money, says there are no reason to test t3 of any kind in any circumstances. I know they are deaf, dumb and blind but this is the system we have to live with.

    I think everyone, except new people, who uses this group knows the tests we should be having, we want to loose our personal selection of the 300 odd symptoms of thyroid problems and their potentially dire consequences for a person who is incorrectly diagnosed and treated. These things are not trivial in my view but NICE has decided differently, mental health issues, respiratory, reproductive- cell and species, cardiac, digestive issues and many more but in the UK none of it holds any value!

    This lady has not been around since the 4th of October. I hope she is ok.
  • Lenascrivente
    Lenascrivente Posts: 177 Member
    edited October 2017
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    Dear all,
    thanks for your kind answers.
    It has been a tough process - adjusting to Thyroxine is not easy.
    My last blood test showed a TSH decreased to 4.78 (down from 29) and T4 up to 14.
    Fatigue had decreased after three weeks on T4 but now the dosage has been increased and I am feeling rubbish again.
    As said above, no T3 or rT3 tested as I am in the UK.
    Fortunately I had seen an endo privately and he recommended to supplement iron, vitamin D, B complex to make sure I convert. I have added the supplements and also a Brazilian nut a day and my energy levels went up, at least until when I was given an increase from 50 to 75 and I am still feeling the side effects of the adjustment: I've had a persistent flu with ear infection for 10 days now, and in the last two days was sleepy and sluggish, plus crying for no reason just like what happened after about 7 days I was started on Thyroxine.
    For now I am taking a wait and see attitude. My next step is to see whether I stabilise at this dosage, and as soon as I get the blood tests right and hopefully a decrease in symptoms I will be back to CICO to shift the weight that affects me so much.
    I managed a 10miles walk in the hills yesterday but today was in so much joint and muscle pain, plus crying spells, that I had to take the day off sick and sleep throughout the afternoon.
    It is really affecting my work life, so I hope I get some sort of balance soon and then start working on my weight. Any advice is welcome - I think one of the next steps is adding a bit of good quality meat and bone broth into my pescetarian diet as I am told it might help with gut healing and collagene.
    By the way, I am now at 106 kg for 154 cm. I am looking first of all at getting back at the weight I have been most of my life (75kg) so this is 30 kg to lose, though in total I guess I am probably looking at a 50 kg loss. Even saying this now sounds completely nuts as no matter what I do I am not shedding a gram! I want to be healthy again first of all.
    Thanks for any advice and support you might give
    Lena
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    Also UK.

    So good to hear from you again. Its good your tsh is lowered, that you have t4 of 4, is interesting, wish we knew how the t3's are doing, Your walk sounds wonderful, sorry you are in pain now. So sorry its so difficult for you. its not uncommon for someone to initially do well on t4, it is well documented on thyroid support sites here (UK) that after a few months the beneficial effects of t4 can just drop away and do not respond to higher levels.

    You can get full panels done ordered through thyroid UK, who offer a discount, It comes down to personal finance. I'm so sorry. You'll need to get to one of the private hospitals for the blood to be drawn, I don't think the gp's are permitted to be helpful any longer!! The advantage of doing this is you will have your antibody levels reviewed, these indicate Hashimoto's which is so very common, more so than inadequate iodine etc levels. Knowing if you have antibodies gives you the option to see what is causing any antibodies, food intolerances or more.

    Your pescetarian diet should be good for iodine and selenium if you include salmon. Moving to add meat might also help. I use glucosamine hci for joints along side everything else. (its not protected me this October though. I fear its the temperature drop which has made the difference. I do well, better when its summer temps 20 c round the clock, giggle). So I added in msm to my regular regime.

    There is also information on the UK support sites, some people have issues converting, need heavy vitamin and mineral loading, some unfortunate soles are at a genetic disadvantage! There are genetic tests available. It is also noted many hypothyroid people are b12 deficient. I use some with the microbes/enzymes to aid its being taken up. I've not been tested on the NHS, it should be available like so many things which are known to impact our endocrine systems.

    Its very much finding what works for you. Please refer to our thyroid support sites, follow your symptoms, for some, this is far from the simple one pill treatment the NHS is permitted to offer. I gave up work early because I could not achieve a diagnosis.

    Sorry I'm so down about it all. I've been symptomatic since childhood (soon to be 68). It took finding the Bant, nutritionist two and a half years ago to get any improvement for me. We needed to track down answers to my food, chemical, histamine, salicylate intolerances which it is difficult to get recognised in the UK. Region does but the local call it woo!
  • allergictodiets
    allergictodiets Posts: 233 Member
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    Oh I feel for you! I live in Germany when admittedly you get a full thyroid panel when tested but the standard treatment is synthetic t4 only. The supplements you mentioned are quite important and made a lot of difference for me ( especially Vit.D ). My doc seems to think that brasilian nuts are not a reliable source of selenium - she said that the content varies vastly depending where they were grown. I would consider adding fish oil to the mix - it seems to help me with my brain fog. Like Fuzzipeg I have Hashimoto's so when I'm finished nursing my daughter I will go back to taking Turmeric extract as well, as it seems to help my flares under control. Good luck, hope you feel better soon!!
  • runner_gurl76
    runner_gurl76 Posts: 37 Member
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    It is certainly an adjustment period. I was diagnosed in 2010 with a TSH of 52. I was literally falling asleep in my chair at work, when not home sleeping away the other 16 hours of my day.

    Years into the diagnosis, my levels are still high normal but in Canada the struggle to find a doctor who knows how to properly treat is difficult.

    As for the weight loss, the only thing that has worked for me is a Ketogenic diet. Tried CICO and at one point still gaining weight on 1000 calories a day. Eating lower carb was the key for me.
    I wish you much luck on your journey.
  • Lenascrivente
    Lenascrivente Posts: 177 Member
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    Thanks everybody - I am sticking to the idea of using MFP once my blood tests are good although I wonder how long it will take.
    After the last increase (75 mg) my TSH is still at 3.9 . The worst thing is that I am catching up colds all the time. In the last four months I had to call off sick once a month because I would be down with a flu or a bad cold, with fever etc. - as I am at the moment tbh. It is really becoming a problem!
    I am sticking to a gluten free diet but I appreciate (@runnergirl) that a ketogenic diet will be ultimately what I need to do. I just feel too washed out to start now but I think that's the next step.
    Thank you all and keep me posted
  • allergictodiets
    allergictodiets Posts: 233 Member
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    You have mentioned that your Vit D levels were checked - were they within recommended range? Taking Vit D regularly ( 1000 - 2000 iU depending on the season ) helped me with persistent colds.
  • Lenascrivente
    Lenascrivente Posts: 177 Member
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    Dear all - I have now been given another increase, waited the six weeks and my TSH is now down to 2.8 and T4 up at 16 - with 100mg of thyroxine. I am also on iron, B12, vit. D.
    The GP sent me off sick for three weeks when ordering another increase of thyroxine, as I had an ear infection not clearing with antibiotics for +5 weeks and recurring fevers. They also tested me for celiac which gladly came back negative, though I stay away from gluten anyways as it gives me bad gastrointestinal symptoms.

    On the bright side: I feel like myself again and am really glad that this is starting to work! I am walking 4km a day without crashing, wake up ok and sleep well, without joint or muscolar pains.
    Now that my blood tests are good enough, I decided to try to the high-protein low carb - gluten free route as you guys suggested. I started a week ago and I must say eating meat makes my life easier while travelling. Also having eggs in the morning without any carb at all is really good as I don't get hungry at all.
    Can you please look at my diary for this week?
    I am travelling so there is a shortage of vegetables. I am generally feeling fine on this plan - any advice welcome.
    Lena
  • Fuzzipeg
    Fuzzipeg Posts: 2,298 Member
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    I'm relieved you have had such good support from your doctors. When we go down hill with this thing we do go so very low. Its surprising the difference b12 and vit d can make too. Its so good you feel like yourself again, ear infection over come too. All the very best with the high protein/low carb. I hope you see some excellent results.

    As you requested I did look to see your logging for the last week, your diary is closed. Out of curiosity, how many eggs are you having in the morning? Best wishes for your travels, I know its been grim most places. Thankfully we have not been as impacted as most down here and are coming out of it too. Hope the rest of the country follows suit.
  • kp7067
    kp7067 Posts: 9 Member
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    Maybe get a second opinion. An endocrinologist could be better than a regular doctor, unless that’s who you’re seeing already.
  • Lenascrivente
    Lenascrivente Posts: 177 Member
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    Dear all,
    I am back after one year. It has been a long struggle to get my thyroid in balance, which happened eventually last year around May.
    I left MFP because I realised my goals were not realistic given the time of my life I was going through.
    1) thyroid imbalance takes time: once the numbers are good, they need to be so for a while before you gain your health back
    2) family and work related stress: that makes it impossible to prioritise yourself

    After one year so much has changed. It has probably been the toughest year of my life.
    Something clicked inside me one month ago and I started losing weight.
    In one month I lost 14 lbs and I am now here for the long haul.
    I need your support and I also want to stress how futile it is to try and lose weight when your thyroid is not yet in balance. My nutrients were so depleted and my immune system so activated that my body was in practice fighting a war against itself..

    One year after, I reached 244 lbs in March 2019 and I am now down to 230 lbs now. Goal is to reach 130 lbs.
    My loss rate is about 2 lbs a week. I feel better than I have felt in years, doing 1600 kcal a day, 100 gr protein a day, 300 gr veggies a day, no carbs at night, at least 60 minutes walking a day, not eating back my exercise calories. I never go hungry and for now things are looking sustainable. I need this community to encourage me and cheer me up as I know there will be difficult times. You already supported me during my thyroid problem - it took incredibly long to get it in check - and I appreciate that a lot.
    Lena