Arrogant Endo

[Roulette26]

My first meeting didn’t go well, had been offered carbimazole or monitoring 2 years previously by his colleague, chose monitoring. 18 months later told by GP needed to start treatment. Seeing him for the first time his opening statement was “ you needn’t have gone onto carbimazole so soon “. Who was wrong, me, the other endo, the GP or him??

Since then he dismisses any queries, stock answer— see your GP. Having had RAI he’s handed me over to a specialist nurse, all the while making recommendations about my treatment without actually finding out how I’m feeling. Wanted me to stay on 75mcg levo, I insisted on an increase. Same with 100mcg, I managed to get her to agree with an increase to 125mcg. I’m 84 kilos, do the maths! Last blood test my T4 was 23.7, he wanted me to alternate 100/125. I said I would monitor how I was feeling. I knew it was coming down as I could feel the changes. Latest Medicheck result 22.7. Received a copy letter in which I apparently agreed to follow his regime. Also a snide comment that I must be seeking private advice!

I have an appointment (telephone) next week, I’m sure he’s going to discharge me as the nurse reminded me it has been a year, never has blood test 6/8 weeks, usually 12 or more.

Since starting treatment on carbimazole/RAI/ levo I’ve developed psoriasis, gluten intolerance and a weird nerve sensation in my feet. How can I get him to explain what’s going on ? Also where do I stand on holding my ground about not alternating the dose? I’ve tried it for the last 3 weeks, my sleep is restless, wake during the night overheating, during the day have to sit on my hands to get them warm! I’m back to suddenly falling asleep during the day. Balance is off again. Sudden bouts of depression and tearfulness for no good reason

Sorry it’s so long , I’m just seeing advice from the amazing people on here, who’ve managed to save my sanity.

Thank you all.

[SlowDragon Administrator]

Recommend you get FULL thyroid and vitamin levels retested again via private testing

Previous post shows high ferritin

What were most recent vitamin D, folate, B12

We need OPTIMAL Vitamin levels, not just within range

After RAI common to need addition of small doses of T3 prescribed alongside levothyroxine

But all four vitamins need to be optimal first

Gluten intolerance suggests poor gut function, likely to need T3 prescribed

[Roulette26 in reply to SlowDragon]

Thanks slow dragon, has full test 24/3/21.Vitamin levels still low, ferritin higher 345, some studies say raised ferritin up to 400 in post menopausal women is quite normal. Full blood by GP last October didn’t reveal any other issues.

TSH 1.08 (0.27-4.2)

T4. 22.7. (12-22)

T3. 4.72. (3.1-6.8)

[SlowDragon Administrator in reply to Roulette26]

What are actual vitamin D, folate and B12 results

What vitamin supplements are you currently taking

Yes higher ferritin is common post menopause. GP should test iron levels too to check only ferritin is high

Do you always get same brand of levothyroxine at each prescription

Which brand?

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

[Roulette26 in reply to SlowDragon]

Last private test done 26/3/21 at 8.30 am.

TSH 1.08. (0.27-4.20)

T4. 22.7. (12–22). Down from 24 last December when I started 125 mcg levo

T3. 4.72. (3.1–6.8)

ATP. <9. (<34)

Tgab. <10 (115)

Vit D. 78.4. nm/L. (50–175)

B12. 75.4 pmol/L. (>37.5)

Serum folate 8.01 ug/L. (>3.89)

Ferritin. 345.ug/L. (13–150)

CRP HS. 1.86mg/L. (<5)

I’ve stopped taking vit C and zinc, apparently both of these can cause raised ferritin as well as poor T4 conversion.

Vit D spray daily.

Unable to source suitable Vit B because of stock shortage.

Levo brands are;

100. Accord

25. Mercury

Comprehensive blood test in October didn’t show any other issues apart from the high ferritin.

Ferritin check December showed an increase, was told by the doctor ( locum?) via receptionist 340 was ok.

Endo received the same results and is not interested.

[Roulette26 in reply to SlowDragon]

P.S. I don’t consume vast quantities of alcohol, maybe 1 unit every 2/4 weeks and GP ruled out hemochromatosis.

[SlowDragon Administrator in reply to Roulette26]

Are you post menopause?

Higher ferritin not uncommon after menopause and with inflammation of autoimmune disease

Ideally GP should test iron every year or two to check iron not high....only ferritin

[pennyannie in reply to Roulette26]

Hey there again :

Well your conversion ratio has improved a bit and is now out at 4.81 but still way outside where it needs to be for you to feel better than you currently are.

A fully functioning thyroid would be supporting you daily with trace elements of T1. T2 and calcotonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 is a storage hormone needs to be converted by your body into T3 the active hormone that runs the body and pts the fuel in your tank as you now have no automatic pilot light and thyroid to start your functionality.

T3 is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 just to function.

So in effect you have been down regulated by some 20 % by not replacing T3 -synthetic Liothyronine alongside T4 - synthetic Levothyroxine.

Some people can get by on T4 only, some people find that T4 seems to stop working as well as it omce did, and soe people simply need both T3 and T4 dosed and onitored independantly to restore balance to both these vital hormones and at a high enough level in the range to be acceptable to the patient.

I was declined a trial of T3 and NDT from the NHS when my thyroid ceased to function after RAI treatment for Graves. I decided to self medicate and have sorted myself out and am much improved thanks in the most part to Thyroid uk and this amazing forum.

I now manage lingering Graves, thyroid eye disease and hypothyroidism and both my self admistered trials of T3 and NDT worked. I am now in my third year on Natural Desiccated Thyroid, which is pig thyroid dried down into tablets referred to as grains, and it contains all the same known thyroid hormones as that of the human gland.

I still need to maintain optimum vitamins and minerals levels and I think I would be concerned about your high ferrtin level.

[SlowDragon Administrator in reply to Roulette26]

Like many after RAI you have poor conversion and likely to need prescription for small doses of T3 alongside levothyroxine

[SlowDragon Administrator in reply to Roulette26]

Likely to need to reduce levothyroxine by 12.5mcg or 25mcg and add in 2 or 3 x 5mcg doses of T3 at roughly equal 8 hour intervals

Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3

...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2

When adequately treated, TSH will often be well below one. Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Currently Ft3 is only 43% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator