I thought I was finally going to see an endocrinologist but the surgery has just rung to say the endocrinologist has written to my GP advising they don't need to see me.
They have recommended reducing my Levothyroxine. My GP also wanted to do this and when I said that I felt so unwell and wouldn't agree he said he'd refer me (phone consult). I now realise he was just getting rid of me. (Don't know him from Adam).
From what I have read I think I am not converting to T3 but what do I know.
Relevant test results.
9/20. TSH 0.76. (0.27-4.2). T4 18.1 (12-22). T3 3.89 (3.1-6.8)
3/21. TSH 0.01 ". T4 26.6. ". T3 3.90. "
7/21. TSH 0.03 (0.3-5.5). T4 28. (10-22). T3 4.00. "
Age 74. Have been on Levo 150 mcg about 20 years and have felt ok. Three years ago after moving and changing GP I was told I was hyperthyroid and dose lowered gradually to 75 mcg. (This is when I started taking an interest in the numbers. Before this I had no idea).
In September last year I felt unwell and was falling asleep eating my dinner so I increased my dose myself to 100 mcg.
In March I had an NHS test and as T4 had increased I changed to 75 one day and 100 the next.
The doctor wasn't happy and in July I agreed to go back down to 75 mcgs. I intend to have another test in three months, October.
I really don't feel I can take a reduction in my Levo. I thought I was lucky to have been referred to an endo but it was false hope. Doctor will discuss this by phone on September 3rd!
I may have to go down the private route but would like some opinions on whether it would be useful for me. Or are my symptoms just a fact of getting older.
Thank you.
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RattyPatty
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From what I have read I think I am not converting to T3 but what do I know.
You are correct and know more than both the GP and endo put together.
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 that is where you feel well.
9/20.
TSH 0.76. (0.27-4.2).
T4 18.1 (12-22) = 61% through range
T3 3.89 (3.1-6.8) = 21.35% through range
Poor conversion of T4 to T3.
3/21.
TSH 0.01 ".
T4 26.6.(12-22) = 146% of range
T3 3.90. (3.1-6.8) = 21.62% through range
Poor conversion of T4 to T3.
7/21.
TSH 0.03 (0.3-5.5).
T4 28. (10-22) = 150% of range.
T3 4.00. (3.1-6.8) = 24.32% through range
Poor conversion of T4 to T3.
Assuming that you did your tests under the exact same circumstances each time, ie
* early morning, no later than 9
* nothing to eat or drink except water before the test
(those two points affect TSH only)
* last dose of Levo 24 hours before test
(if you took Levo before test it gives a false high result, any longer than 24 hours gives a false low result).
Can we assume your key nutrients are at optimal levels, ie
Vit D - 100-150nmol/L
B12 - top of range for total B12, for Active B12 at least 70, preferably 100+
Folate - at least half way through range
Ferritin - half way through range
Assuming all above then there is no doubt that your conversion is poor, the two most recent tests showing that you need a very over range FT4 to achieve a paltry FT3 less than a quarter through it's range.
Unfortunately doctors are totally unaware of this and only look at the TSH which is wrong. The TSH is a pituitary hormone, not a thyroid hormone, it's the FT4 and more importantly the FT3 that tell us our thyroid status.
You may have more luck with a private endo but choose carefully, I see from previous posts that you have the list from ThyroidUK, ask on the forum for members to contact you by private message with any information on any that you can travel to, especially whether they have been successful in getting T3. Or there is, of course, the option to source your own T3. You will need less Levo plus the addition of some T3. Members will help if this is the route you wish to take.
But first you will need to get FULL Thyroid and vitamin testing done
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking, if any
Can see from previous posts your dose has been reduced from 175mcg
Now your Ft3 is far, far too low
Which brand of levothyroxine are you currently taking
Do you always get same brand
Are you ONLY taking levothyroxine, not any T3?
Taking almost any dose of T3 will significantly reduce or suppress TSH
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
If you can get GP to test vitamins and antibodies then 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/
NHS easy postal kit vitamin D test £29 via
vitamindtest.org.uk
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
thriva.co/tests/thyroid-test
Thriva also offer just vitamin testing
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/if-you-are-un...
Meanwhile Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
Private
tukadmin@thyroiduk.org
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)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Thank you. Please see my reply about vitamin levels above to Seaside Susie if that's ok.
I take Centrum Advance multivitamin.
I take Teva as it's the only one the pharmacy will get me. Before I moved and changed GPs I think I always had Mercury. I have been unable to get that but I do insist that the brand's aren't changed every prescription.
Only Levo.
No results re TPO and TG thyroid antibodies.
As you and Susie agree that it appears that I am not converting T4 to T3 well and the GP wants to reduce my T4 even lower I don't know whether to suffer that for a couple of months and then get a private test done to see if my T3 has dropped off the scale.
Otherwise I think I may have to spend some money on a private endo.
I have one in mind. I think it was from here. It's all done on the phone (and was before Covid) and using Medichecks.
Teva contains mannitol as a filler, which seems to be possible cause of problems.
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, or Aristo (100mcg only) are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
We never normally recommend taking multivitamins, but your results look ok, apart from vitamin D which needs improving to at least around 80nmol
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
You could request GP write No Teva on prescription or Mercury Pharma brand only
The accepted conversion ratio when on T4 - Levothyroxine only is said to be :- 1 / 3.50 - 4.50 - T3 /T4 - with most people feeling at their best when they come in at 4 or under:
So find find your conversion ratio you simply divide your T3 into your T4 :
and I'm getting yours coming in at 9/20 at 4.65 : then 3/21 at 6.82 and now at 7/21 at 7 : showing your ability to convert the T4 into T3 decreasing throughout this period :
Your first result in 9/20 showed all your results in the ranges and is the best result of the 3 though just outside the accepted ratio and showing conversion slightly compromised.
Low vitamins and minerals can compromise T4 conversion, as can any physiological stress - emotional or physical , dieting, depression, inflammation and ageing :
The logical solution is to see an endocrinologist who has the professional integrity and ability to prescribe some T3 alongside some T4 to rebalance both your T3 and T4 thyroid hormones and to bring them both back into the ranges and at a high enough level that gives you back your health and well being.
The TSH was originally introduced as a diagnostic tool to help identify a case of hypothyroidism and was never intended to be used once the patient was on any form of thyroid hormone replacement. Once on any thyroid hormone replacement you dose and monitor on T3 and T4 blood test results and look for them to be in the ranges at roughly a 1/4 ratio, T3/T4.
Sadly it seems in primary care that many doctors are only able to order a TSH blood test, and the laboratory decides if further analysis of T3 and T4 are needed.
Seen is isolation your TSH will be picked up as low suppressed and highlighted as " hyper " on the computer dogma and if your doctor doesn't understand thyroid and look further at your T3 level, and is time poor or not knowing anything else, will likely think you need a dose decrease which isn't the solution and will just compound your health further.
I'm with Graves post RAI thyroid ablation and became very unwell around 8 years later when around age 65, and I too was subjected to dose reductions and in an ever decreasing circle of wellness. I now manage lingering Graves, thyroid eye disease and hypothyroidism and have been self medicating for over the last 3 years and am much improved.
P.S. The endo may have refused to see you as if you live in an area of the country where new prescriptions of T3 - Liothyronine are " not to be considered " the endo's hand maybe tied if he wants to keep his job. It is a post code lottery and I'm afraid people needing T3 on the NHS are having a very hard time, if not an impossible task, getting any NHS acknowledgement of their health issues.
Thank you for replying (although maths was never my strong point🙂).
I was aware that T3 wasn't prescribed in Dorset even by private endos.
I hoped I could see one on the NHS who would agree to monitor me if I supplied the T3. But as that's a no now I will have to consider seeing one privately.
The 9/20 test you say is the best was the one where I decided to up my dose from 75 to 100 because I was eating my dinner with my eyes closed I was so tired.
This has obviously affected my TSH and T4 and the doctor doesn't like it.
Prior to moving here I was at the same GP practice for 50 years (different doctors obviously). The doctors there are husband, wife with their son joining them. They have had the practice a good few years.
Fortunately I didn't need to go very often but everyone, reception included, were very nice. Doctors remembered you.
I have been at this practice just over 3 years. I saw a doctor when I registered and another to talk about my Levo dose as this was when my dose started to be reduced from 150 to 75.
I don't know them and they don't know me. The endo doesn't know me. Fair enough. But no one has asked me how I am feeling. Just "I'm reducing your dose".
Your nutrient results might look good as SlowDragon says, but that could be despite your multi-vit, rather than because of it. Also, some of the ingredients might be doing you harm that you don't realise. Here are all the reasons why you shouldn't take a multi-vit:
* If your multi contains iron, it will block the absorption of all the vitamins - you won't absorb a single one! Iron should be taken at least two hours away from any other supplement except vit C, which is necessary to aid absorption of iron, and protect the stomach.
* If your multi also contains calcium, the iron and calcium will bind together and you won't be able to absorb either of them.
* Multi's often contain things you shouldn't take or don't need : calcium, iodine, copper. These things should be tested before supplementing.
* Multi's often contain the cheapest, least absorbable form of the supplement : magnesium oxide, instead of magnesium citrate or one of the other good forms; cyanocobalamin instead of methylcobalamin; folic acid instead of methylfolate; etc. etc. etc. This is especially true of supermarket multis.
* Multi's do not contain enough of anything to help a true deficiency, even if you could absorb them.
* When taking several supplements, you should start them individually at two weekly intervals, not all at once as you would with a multi. Because, if you start them all at once, and something doesn't agree with you, you won't know which one it is and you'll be back to square one.
* Most supplements should be taken at least two hours away from thyroid hormone, but some - iron, vit D, magnesium and calcium (should you really need to take it) should be taken at least four hours away from thyroid hormone.
*Vit C should be taken 2 hours away from B12 because it affects how the body uses B12.
*Never take magnesium/zinc/calcium at the same time as they affect the absorption of each other.
*Take zinc and copper separately as zinc affects the absorption of copper.
*Vits A/D/E/K are all fat soluble vitamins, and if taken together can compete for the source of fat. They are best taken away from each other.
* The magnesium you take - and just about everybody needs to take it - should be chosen according to what you want it to do:
Magnesium citrate: mild laxative, best for constipation.
Magnesium taurate: best for cardiovascular health.
Magnesium malate: best for fatigue – helps make ATP energy.
Magnesium glycinate: most bioavailable and absorbable form, non-laxative.
Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.
Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.
Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.
With a multivitamin, you are just throwing your money down the drain, at best, and doing actual harm at worst. Far better to get tested for vit D, vit B12, folate and ferritin, and build up your supplementation program based on the results. A vitamin or a mineral is only going to help you if you need it, anyway. More of something you don’t need is not better, it's either pointless or even dangerous, as with iodine, calcium, iron or vit D.
Thank you for replying. I tend to agree with you about the need for most supplements but it was a bit of clutching at straws! Forgot to take one most of the time anyway.
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