I am hoping someone can help me. I used to be really skinny as a teenager and lived in a sunny country. One day my neck got very swollen and after this repeating a few times I decided to visit a doctor who said I had thyroid issues. I can't remember the diagnosis back then but he said I would have to be on thyroid medicine for the rest of my life.
Since moving to UK in 2004 I struggled to get any doctor to help me and all of them said I was fine, even though I had nearly all symptoms of hypo here. I was 59Kg in 2004 (175cm), had kids (2006, 2009) then had a hysterectomy in 2023 (leaving ovaries). Now I'm nearly 80kg and this coupled with constant exhaustion is really depressing me. The weight gain shot up after the hysterectomy.
I have recently done some lab tests and I would appreciate if you could help me reading them. My TSH was 3.9 in December 2023 when an NHS doctor finally agreed to give me some Levo (25mcg). This was then increased to 50mcg in July 2024 (a month prior to these results) but I'm still feeling awful and the weight keeps going up.
Still looking for a proper diagnosis so will be seeing an endo in London in a few weeks but would appreciate any views before I see her. I'm 43 and also taking HRT (Estrogen 100 mcg and Testosterone) Thanks!
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alebr
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Testing should be 6-8 weeks after any dose change
So you probably tested too soon
Suggest you Retest now
50mcg is only the standard STARTER dose
Likely to need further increases over coming months
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Essential to test vitamin D, folate, ferritin and B12
Lower vitamin levels more common as we get older
For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels
What vitamin supplements are you taking
Also VERY important to test TSH, Ft4 and Ft3 together
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
majority of endocrinologists are diabetic specialists and often useless for thyroid
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Thanks SlowDragon for your extensive response. I have tried to add a better file but I can't add multiple pages so I put the link to the file below. I should have added that the endo I will see is part of BUPA and also attends privately but I will check the other doctors on the link you sent. I got a commentary from a GP with these results asking me to take Iron tablets and vitamin D which I'm now taking. I also take omega 3 to help as I'm vegetarian. I'm constantly tired, have dry skin, hair loss, brain fog, short eyebrows, weight gain and the list goes on....
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency.
Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 at least few times a week if not daily
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12
Post discussing how biotin can affect test results
I am in the same state I have appointment to see GP to ask to see endocrinologist it is soon 1st battle then you have to convince endocrinologist 2nd battle to try you on T3 which is very expensive in 🇬🇧 UK which I feel is real reason they do not want to prescribe it. God knows if it works I need my energy back lacking motivation right now. I hope all goes well with you. Cannot see your attachment
Fascinating. No up to date TSH result or T4. Just the all important T3 result. I wish my T3 was as good as yours. Just saying. I totally hear you though if you don’t feel well all the same.
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