I’ve been on levothyroxine since august last year as a trial having begged my gp to try despite my tsh being only slightly raised I had all the clinical signs
Initially I felt better but since January I’ve been going downhill with my energy again. Last tests showed my t3 hadn’t really changed while t4 was top of range and tsh very suppressed.
after advice on here I booked second lots of tests to see if t3 moved after a solid 3 months of levo
Results in:
TSH 0.05 (0.27-4.2)
T3 3.62. (3.1-6.8)
T4 20. (12-22)
Ferritin 30.7 (13-150)
B12 113(37.5-150)
D 61 (50-200)
TGA 15 (<115)
TPA<9 (<34)
I still can’t get my vitamin d and ferritin up despite supplementing, b12 has dropped a bit too despite injecting
I believe this suggests I don’t convert t4 very well and should be on some form of t3. What are my next steps with gp or do I have to find private source? I have the thyroid Uk list if anyone can recommend someone in southeast Uk please message.
thanks in anticipation of help and support which has been fabulous and without which I don’t know where I’d be.
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Mag999
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Was thyroid test early morning and last dose levothyroxine 24 hours before test
How much levothyroxine are you taking
Which brand of levothyroxine
How much vitamin D are you taking
Are you also taking and magnesium or vitamin K2
Ferritin is extremely low
Are you vegetarian or vegan
Pre or post menopause
You need full iron panel test for anaemia if not done one
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Medichecks iron panel test
Test early morning and fasting. Don’t eat iron rich dinner night before test
yes was early morning and no levo for 24 hours. I’m on 75mcg and gp won’t increase it with my tsh so suppressed
I’m vegetarian and post menopause which is a whole other story
On a vitamin an and d combo at 200%rda on nutritionist recommendation.
No b complex yet as I absorb so poorly. Nutritionist working on gut issues
Will look at iron panel thanks
I have had 3 lots of tests done and t3 hasn’t moved and I’ve got worse I have been supplementing for 3 years and just can’t seem to get to an optimum level.
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
Exactly how much vitamin D are you currently taking
It’s clearly not enough
With thyroid disease we frequently need higher dose vitamin D than typical
Personally, with Hashimoto’s and gluten and dairy intolerance I need 4000iu daily in summer and 5000iu daily in winter as a maintenance dose to maintain vitamin D between 100nmol-125nmol
And I needed even higher dose for 6-8 months when improving low vitamin D up from insufficient level
Strongly recommend you start a daily vitamin B complex to balance B vitamins
thanks for all the above, I will increase vit d and look at b complex with nutritionist she has been v helpful but says useless me taking an array of supplements till I improve my digestion but seems it’s a bit chicken and egg with low t3 lowering stomach acid ( which I tested for and is low)
Helpful to know not to worry about tsh so much also.
My gp is very helpful but won’t go outside any nhs guidelines. Will discuss with her as she is always interested in what I bring back from the forum
In a study evaluating tissue function tests before total thyroidectomy and at 1 year postoperatively when using LT4, it was found that peripheral tissue function tests indicated mild hyperthyroidism at TSH <0.03 mU/L and mild hypothyroidism at TSH 0.3 to 5.0 mU/L; the tissues were closest to euthyroidism at TSH 0.03 to 0.3 mU/L [48]. A normal serum TSH level consequently does not necessarily indicate a euthyroid state at the tissue level.
Improving low vitamin levels should improve poor conversion, resulting in lower Ft4 and higher Ft3 and ability to then increase levothyroxine further
On levothyroxine plus T3 prescribed alongside TSH likely to drop lower, typically to 0.01
Yes you are right your conversion of the T4 - Levothyroxine into T3 is not good.
You can check how well you convert by dividing your T4 by your T3 :
I'm getting yours conversion ratio coming in at 5.52 .
The accepted conversion ratio is said to be 1 - 3.50 - 4.50 T3/T4 with most people feeling at their best when they come in this ratio at 4 or under.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal and i know from experience I feel at my best with a ferritin at around 100 : folate around 20 : active B12 75++ ( serum B12 500++) and vitamin D at around 100.
Your ferritin is much too low - i had investigations and a full iron panel when my ferritin was at 22 - all was ok - and then I started with a prescription iron tablet that made matters worse and wasn't offered an alternative so started buying my own and slowly I managed rebuild through supplementing and eating liver twice weekly - i felt marginally better when ferritin crept over 45 and then it was another few months and I after I passed 70 everything started to fall into place and the thyroid hormone replacement taking effect.
How much Levothyroxine were you put on last years and did you have blood tests every 6-8 weeks and your T4 dose increased as needed to build up your level of T4 ?
thanks for your info, I’m veggie but thinking I may have to try medicinal meat atlowest possible level to improve things as I’m at rock bottom.
I’m on 75 mcg levo not been increased as firstly blood tests hard to come by and each time my t4 was top of range it’s only having my t3 results that they haven’t insisted on reducing my dose.
I clearly need to up all my vits and minerals so will get on with that. Thanks for your reply
Apologies for jumping on someone else’s post , I just wanted to ask you what iron replacement you used . I have the same problem with my iron prescription from the Gp & need an alternative. ?
I am confused as my haemoglobin is normal but low ferritin, and it’s been low for years so not sure why that hasn’t translated into low haemoglobin. how do you get your iron stores up without raising haemoglobin? I have got iron panel results coming this week
I started buying Gentle Iron - but probably any iron bisglycinate will be suitable as it's softer on the stomach and bowel
I also ate liver twice a week and took sachets of liquid iron Spatone ;
i now supplement with a 200g tub of chickens each week which I make into a pate and take around a spoonful a day with a dollop of Hellman's to help this medicine go down.
A note about ‘managing’ GPs. I have found if I stick to one complaint, I get a better hearing. I supplement with written letters too which are added to my file. Not necessarily acknowledged but in my file. I have been mismanaged for so long I feel this is important, gives me a little bit of control. GPs sort of go off in all different directions if you give them too much info at once. It looks like it’s ‘helpful’ but I think now it’s cleverly disguised panic. Panic about what exactly? Panic to get one out of their office! This happens to our overall detriment.
I am lucky mine is helpful but I take your point and have written letters to clarify my situation. It’s hard when multiple issues are going on which are linked but the nhs doesn’t see it that way. I’ve been sent to multiple specialists for various aspects of low vitamins/hypothyroidism as my gp says there are no old fashioned generalists anymore.
You end up feeling like a collection of body parts and no holistic overview is taken.
Yes I always think that there is no more ‘wholistic’ illness than hypothyroidism. Doctors are probably the last people on the planet to see or understand this. Each individual symptom needs ‘diagnosis’ and drugs (more or less) or some other intervention specific to each condition spotted. No, most of our symptoms really are because of the hypothyroidism; if only doctors realised this. Symptoms are clues to where our meds are, or are not. No wonder there has been a huge rise in alternative or complementary medicine. I truly fail to understand them not knowing more about hypothyroidism. The waste of money in the NHS because of lack of education of doctors must be massive. Just treat us properly and a huge bill within NHS could be reduced markedly. Of course they would then have to prescribe T3 in some cases. What is that old saying? Destroyed ships all for halfpenny worth of tar. Or something like that.
Your Vit D is slightly better than mine. I've been advised to try a liposomal version as Vit D is fat soluble. May be more expensive than "normal" versions.
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