Hi all - I've not written for a while as although not feeling 100% tickety boo, I've plodded along. I'll try to keep this short Last year my T3 was taken away from me by my Endo as it became blacklisted. I was also needing an arthroscopy which the anaesthetist cancelled a couple of times because my TSH was not 'in range' (it was suppressed, which I feel ok with). So, they messed around with my meds until they got the TSH to where they could do the operation (it was 5 - (0.27- 4.20). I obviously didn't feel great but after the op, restarted 125mcg of Levothyroxine. Fast forward to February this year, 2 stone heavier, so started an exercise regime at the gym, quite intense (3 days a week) but I feel I needed to try anything to get this extra weight off. Just had my bloods done (3 weeks into gym regime) and they have come back as:-
TSH 16.56 (0.27-4.20)
FT3 3 (3.1 - 6.8)
FT4 16.1 (11.0 - 25.0)
Endo has written to me to increase my Levothyroxine to 175mcg. Any thoughts/advice on this would be grand. Do you think it's the exercise or lack of T3?
Thanks in advance
Terri
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Terri66
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Your FT3 is currently below range (but not surprising) and exercising will deplete what little T3 you do have, so at the moment it would be advisable to cut out the exercise and stick to gentle exercise like walking, swimming, yoga, etc.
You very likely have poor nutrient levels as well, so it's advisable to test:
Vit D
B12
Folate
Ferritin
Post results when you have them and members will make suggestions to help if levels are low or deficient.
SlowDragon has information about what can be done when T3 prescription is removed, she may be able to tell you if there is anything you can do about this.
Thank you SeasideSusie for the reply and the advice, much appreciated. I'm sure I am due an MOT at the GP's for full blood count so I'll book in for that. Re the exercise, I think it's a case of me wanting to feel 'normal' and to keep up with people my own age, which I do but boy I suffer for it...... pride comes before a kna****ed body
Because your TSH is significantly elevated and T4 relatively low in range, I can understand the recommendation to increase T4 first and normalise fT4 to the top end of the normal range.
If your fT4 reaches 22-25 and your fT3 and TSH do not normalise also, then that is fairly conclusive of a requirement for T3 in addition to T4.
Whenever there is low fT3 as SeasideSusie pointed out, nutrient levels must be optimised.
Aside from the testable vitamins and minerals she listed, ensure your diet has adequate Selenium, Zinc, and Magnesium. Many patients with with hypothyroidism could benefit from additional Selenium (200-400% RDA) to support Deiodinase enzymes.
For optimal Vitamin D ranges, I recommend you check out the "Vitamin D council" website as there is a wealth of useful information there.
Brilliant, thank you for the reply/advice anonymous45. When I get the results of the vits and mins I'll take it from there, in the meantime I'll check out the Vit D council.
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Note that it says test should be in morning BEFORE taking Levothyroxine
Also medics to test vitamin D, folate, B12 and ferritin
New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when treated with just Levothyroxine
Just had a look Humanbean and it's stated in the Shared Care agreement towards the end of the paper - see below. Mind boggling really as they let you increase to 5> before doing anything xx
Combination levothyroxine / liothyronine should not be used routinely in the management of hypothyroidism as there is insufficient population based clinical evidence to show that combination therapy is superior to levothyroxine monotherapy. As part of the overall holistic management of patients with hypothyroidism, NHS consultant endocrinologists may start a trial of combination levothyroxine and liothyronine in circumstances where all other treatment options have been exhausted.
1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)
No problem humanbean - it's the second link that SlowDragon has shared, directly under the sentence that says "Also medics to test vitamin D, folate, B12 and ferritin"
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Wow SlowDragon, what a lot of fabulous info. thank you
I am gluten free - but only for the last 2 months, I'd have to restart gluten to have the test done?
I'm almost sure I'm going to go for the Blue Horizon Thyroid 15 tests, as sometimes it's easier to pay than try to get the GP to request the bloods. My GP practice has become a managed practice so even harder to get to see someone.
Thank you all so much for the replies - they help to get another perspective on things. Much appreciated.
If you are already gluten free, don't bother going back on gluten to test for coeliac. (You would have to eat high levels gluten for 6 weeks) It's far more likely gluten intolerance than coeliac.
Have you noticed any difference in symptoms yet since cutting gluten out?
Very unlikely to need the reverse T3 test. Extremely expensive and doesn't tell you much
Most popular test is Thyroid plus 11 via Blue Horizon
Medichecks have offers on Thursdays - Thyroid plus ultra vitamin
These terrible results make me wonder if when your T3 was taken they didn't give you a similar potency of T4 to make up for it
I'm sure you know that you're terribly undermedicated, and probably will need a number of dose increases to get yourself anywhere near on track.
Definitely don't do any heavy exercise, maybe none at all with results like this, as your muscles are very vulnerable without enough hormone. They certainly can't grow and strengthen which is the goal of exercise.
If I were on your shoes, going from feeling pretty well to absolutely dire, I'd be tempted to buy my own T3. Loads of people seem to be in this boat, and doctors almost expect people to buy their own.
When you ask is this the T3 or the exercise, I'd say probably both. I've started to believe that Increasing activity is the equivalent of a dose decrease (on the other hand, resting more is the equivalent of an increase). Of course if you had enough T3 you could probably handle the exercise, but I'm not sure any hypo person, especially one that doesn't feel 100% should be going on an intense routine. Build up gently, 10% or lower increase at a time, and be very watchful for increased symptoms.
Thank you for the reply SilverAvocado - my body does feel like it's been run over by a very big truck....twice
I have bought T3 in the past via America but it's getting increasingly more expensive. My endo did advise me that if I was going to Greece (which incidentally I was) that I should buy it there, but no luck, no pharmacy was stocking it
I think the big fluctuation started due to no T3 and reducing and increasing my Levo to try and get me into 'range' so I could have my knee op. I knew it was going to have a big knock on effect as I feel much better when TSH is really suppressed so when it went to 5,
I felt awful and now it's nearly 17....you can imagine. I will cut down on the exercise as I feel I'm fighting a losing battle until my meds, vits etc. are optomised. Thanks again SA.
Thanks again SA - I was wondering if the Endo would give me a private script to access it from somewhere in Europe - looked on the Thyroid Uk site and it seems to be a bit cheaper.
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Last year my T3 was taken away from me by my Endo as it became blacklisted. I was also needing an arthroscopy which the anaesthetist cancelled a couple of times because my TSH was not 'in range' (it was suppressed, which I feel ok with). So, they messed around with my meds until they got the TSH to where they could do the operation (it was 5 - (0.27- 4.20). I obviously didn't feel great but after the op, restarted 125mcg of Levothyroxine. Fast forward to February this year, 2 stone heavier, so started an exercise regime at the gym, quite intense (3 days a week) but I feel I needed to try anything to get this extra weight off. Just had my bloods done (3 weeks into gym regime) and they have come back as:-
Puzzled by my readings. Help!
Help...am in a right mess!
Help please fresh start!!
Looking for help or advice
