I’m new here diagnosed last year with under act... - Thyroid UK

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I’m new here diagnosed last year with under active thyroid on 75mg Lego, symptoms have got worse , blood tests say satisfactory Serum TSH is

J2506
J2506

3.6 my/l

T4 level 12.8

I feel worse, weight gain (I eat healthy) extreme cold hands & feet, nails non existent so brittle & flaky, joints ache constantly, no energy. I do take vitamin D3, B12 & Zinc, I did take kelp for a little while then read somewhere it can interfere with Levi. My GP is no support won’t increase meds just told me to continue on dose I’m on, I’m 52 & I felt he implied it’s just age related found out I’m post menopausal too but no hot flushes etc yet, just feel very down with it all.

Any advice would be greatly appreciated 🙂

27 Replies
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SlowDragon
SlowDragonAdministrator

Your GP is Wrong

on levothyroxine dose should be increased slowly upwards in 25mcg until TSH is under 2

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Most Important results are Ft3 followed by Ft4

SeasideSusie
SeasideSusieAdministrator

J2506

Can you please add range for FT4 - ranges vary from lab to lab.

Your TSH is telling us that you are undermedicated and need an increase in your dose of Levo.

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

Ask your GP for an increase of 25mcg using the following information:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional magazine for doctors):

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.

You can obtain a copy of the article by emailing Dionne at

tukadmin@thyroiduk.org

print it and highlight question 6 to show your doctor.

Retest 6-8 weeks after dose increase. You may need further increases.

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* Last dose of Levo 24 hours before the test, take that day's dose after the blood draw. This is because if you take your Levo before the blood draw the test will measure the dose just taken and show a false high. If you leave longer than 24 hours the result will show a false low.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

I do take vitamin D3, B12 & Zinc

You need to keep an eye on your levels when supplementing.

What is your current Vit D level and what dose do you take?

Do you also take D3's important cofactors - magnesium and Vit K2-MK7?

As you are taking B12, are you also taking a B Complex to balance all the B vitamins.

Did you test Zinc to know that you need it? Zinc and copper should be balanced.

Isn’t it time to stop promoting upper range anything, particularly excessive levels of t4 and overly suppressed TSH ?..... THERE IS INCREASING EVIDENCE THAT THESE ARE NOT PHYSIOLOGICALLY APPROPRIATE! Also ..... please reconsider promulgating the ideas of stopping or altering treatment regimes to ‘accommodate’ blood testing, we should be testing under a normal steady state regime without perturbations for testing or other reasons, the advice should be merely avoid testing within a few hours of any dose, particularly large doses and avoid large doses so far as practicable anyway since these cause purtabations in themselves.

SeasideSusie
SeasideSusieAdministrator in reply to Hashihouseman

Isn’t it time to stop promoting upper range anything, particularly excessive levels of t4 and overly suppressed TSH ?

Where in my reply have I mentioned excessive levels of T4 and overly suppressed TSH, and did you miss the word "generally". Quote:

The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.

If you have a problem with what Dr Toft says in his article that I quoted then direct your question to him not me.

As for timing of last dose of Levo before blood test, again direct that to the endos who advise their patients to do this, evidence of which has been mentioned in some members' posts.

And from your reply below:

You have a right to normal tsh ft4 & ft3 levels from replacement therapy and these are likely to be in a narrow range of 0.75 -1.25 14-15 and 4.4 - 4.6 respectively.

Your figures are nonsense without reference ranges, you know that ranges vary from lab to lab and when the FT4 range is 12-22 then your suggestion of a level of 14-15 is very low at 20-30% through range.

J2506
J2506 in reply to SeasideSusie

Excuse me?? I'm at a loss at your reply, I haven't been rude or ignorant to you 😳😳

SeasideSusie
SeasideSusieAdministrator in reply to J2506

J2506

Please look at my post again, it wasn't in reply to you. It is indented directly below the message I was replying to. It says

"SeasideSusie in reply to Hashihouseman"

and I have quoted some of the things he has said, not quoted anything that you have said.

J2506
J2506 in reply to SeasideSusie

So sorry for misunderstanding 😳😳

SlowDragon
SlowDragonAdministrator

guidelines on dose levothyroxine by weight - can help persuade GP to increase dose

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

GP is an arse, you clearly need more levothyroxine and then regular testing every 6-8 weeks to check that ALL THREE OF TSH FT3 & FT4 are optimal together! Your TSH is 3 x normal healthy levels for most people, and who knows how bad your ft3 levels are , potentially woefully low and if not they soon will be if your t4 isn’t enough. You have a right to normal tsh ft4 & ft3 levels from replacement therapy and these are likely to be in a narrow range of 0.75 -1.25 14-15 and 4.4 - 4.6 respectively. Demand better treatment or complain to PALS. if you can do your own home finger prick thyroid function blood tests, nhs testing is utter rubbish. And most GPs are ignorant fools when it comes to thyroid treatment.

They will fob you off if you let them get away with it, if you dont know your stuff ( as replies above) and insist they follow their own guidelines. He/she is gaslighting you and will try getting you on antidepressants next instead of treating your chronic condition properly x

You are absolutely right. They will try to make you believe it’s in your mind and not treat you correctly. Best way is to educate yourself as much as you can or go private only.

J2506
J2506 in reply to McPammy

Thanks, yes I'm trying to get as much information & advice, thank you, so annoying that everything is a battle 😳

J2506
J2506 in reply to MichelleHarris

I've written a list from all the help I've had from you lovely helpful people, booked a telephone appointment with the other GP in the morning, thanks Michelle 🙂

I had the same problem, I did not get out of bed for 8 months on levo and felt worse than before I was diagnosed. I took raw thyroid and felt better, not perfect but went on holiday to Bulgaria and have not looked back. After endless accusations on going through the menopause to having mental health problems, years to get diagnosed despite positive tests and obvious symptoms, I refuse to see anymore NHS gps, they are absolutely useless, buying and vile.

jade9390
jade9390 in reply to jade9390

Sorry, I mean't bullying.

J2506
J2506 in reply to jade9390

Didn't think for a second you were Jade, I'm just grateful for all the advice lol 👍

McPammy
McPammy in reply to jade9390

They are unbelievable many GP’s.

J2506
J2506 in reply to jade9390

Omg, that's so me to Jade, I didn't want to bore everyone but yes I've been treated for depression & mental health problems, I've always said it's hormonal you really do feel like your going mad & yes now the menopause.... Where do you get raw thyroid from? not heard of that 🙄🙂

jade9390
jade9390 in reply to J2506

You can google it and find a few places, it takes a while as it is sent from abroad. Ebay seems to be the best place, it takes few days if you get it from Uk sellers. (There were supply issues back in August thanks to covid). I am not saying it will help everyone or has got rid of all of my issues but it is what we used before synthetics like Levo. I am still tired, just not as much and while I am still cold, I no longer sleep wearing 3 pairs of socks, gloves and a bobble hat. My dry skin has gone, hair growth is slightly better, no weight loss but I stopped gaining. I am far less depressed and anxious plus my cognition and memory are a bit better. I take one a day as instructed but just wish we had competant Drs as I am sick of being fat and not a functioning person. Might also be worth you trying T4 which can be bought from people who will send it from Bulgaria. I have tried but it did not seem to help but I had no idea how much to take. 100 Tiromel are about £25 including post, you need to google 'buy t4' to find a company who do that and they will send you a paypal invoice. You do not need a prescription to buy it in Greece or Bulgaria, if you know anyone going there, ask them to buy it. It seems weird but everyone came through the 3 times I ordered and paypal should refund, if it does not.

jade9390
jade9390 in reply to J2506

I use the brand Natural Sources, Raw thyroid. These things are safe , were used previously and are still used and legal everywhere else same as T4. The NHS has too much power and bans safe things which work. If you mention it to your gp, they will try to warn you off with lies that it is dangerous, possibly refuse you further help and insist you carry on with Levo despite it not helping. I functioned and stayed awake longer than 2-3 hours as soon as I took them so think it is worth it and I no longer bother with the nhs. I took cheap private insurance but cannot use it for this previously diagnosed condition. The only thyroid test which my gp said was good, was the last one 2 yrs ago when I quit the levo and took raw thyroid. They refuse to give me the figures as they believe that I am too mentality impaired to understand anything. I am very aware that I have memory, cognition and concentration problems so cannot function like I used to but have a degree and am doing an MBA in the new year. NHS Drs talk to people as if they are untrained animals, if you can afford it, go private. I went to see a private Dr because I really need surgery but the NHS Gp will not even let me see a consultant, it is another pre existing problem not covered by insurance. He spoke to me like a person, I could not believe how nice he was. He wrote to my NHS gp demanding that they do it because it is a problem created by surgery they did 20 yrs ago, so their fault. They still refuse and I now have a legal firm involved.

I cannot see your results including ranges. This info will help members give you clear advice. I see both SeasideSusie and SlowDragon have given you excellent advice. I would just advise you to be careful to stick to pertinent facts when discussing matters with your GP. A reasoned factual discussion is usually more effective than flying off type handle and discussing anecdotal tales read online. I do kniw a lady who used anecdotes regularly and wondered why the GP seemed to disengage every time she made suggestions based on her online findings. This same GP is probably one of the most open I have met when it comes to thyroid health. If you feel your health is not being properly addressed you could ask for a referral to an endo, just be aware there are often criteria in place for a referral. My favourite obscure reason for a refusal is “only Hashimotos/ autoimmune thyroiditis patients can be referred”. Good luck

SlowDragon
SlowDragonAdministrator

Please add ranges on these results (figures in brackets after each result)

For example

TSH 3.6 (0.2-4.6)

Ft4 12.8 (12-22)

Ask GP for 25mcg dose increase in levothyroxine up to 100mcg daily

Bloods should be retested 6-8 weeks after EACH dose increase

Very important to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

What vitamin supplements are you currently taking

J2506
J2506 in reply to SlowDragon

Thank you, my results are - TSH 3.6 (0.27-4.2)T4 - 12.8(12.0-22.0)

I take vit D3, B12,

I will be getting some magnesium & Selenium as recommended on here 🤞

SlowDragon
SlowDragonAdministrator in reply to J2506

So you need 25mcg dose increase in levothyroxine

Bloods should be retested 6-8 weeks after EACH dose increase

TSH will be under 2 when adequately treated

Most important results are Ft3, followed by Ft4

Ft3 should be at least 60% through range and Ft4 likely a little higher

Essential to regularly test vitamin D, folate, ferritin and B12

What were most recent vitamin results?

Should be tested at least annually

Come back with new post once you get vitamin results

J2506
J2506 in reply to SlowDragon

I've got nothing with FT3/4, B12-13.4(3.0-20.0)VIT D-93.6

Folate level 3.4ugl (3.0-20.0)

Ferritin 29ugl(10.0-307.0)

Thanks again for your help 🙂

SlowDragon
SlowDragonAdministrator in reply to J2506

B12 - very odd range - usually something like

B12 (180-690)

Folate is too low

B12 and folate work together

Can you check B12 result and ranges

Ferritin very low

Vitamins are low because you are under medicated, and need dose increase in levothyroxine

Being hypothyroid causes low stomach acid and this leads to low vitamin levels

Low ferritin

Never supplement iron without doing full iron panel test for anaemia first

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

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.

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Low iron and/or low ferritin frequently linked to hair loss

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin ask for full iron panel testing for Anaemia

Thyroid disease is as much about optimising vitamins as thyroid hormones

SlowDragon
SlowDragonAdministrator in reply to J2506

NHS rarely tests Ft4 and Ft3

Recommend getting TSH, Ft4 and Ft3 tested 6-8 weeks after next dose increase

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

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