I was diagnosed as hypothyroid at 17, after no menstration for 18 months.
By 18/19 I was stable on 75mcg with menstration returning.
From 2012 - 2020 I had been put up to 125mcg.
I have to admit that I hadn't been taking my medication very well (taking around 70% of doses) for a couple of years, and downloaded an app called Medisafe to help me take it more regularly.
In summer 2020 my yearly bloods showed that I was being over medicated, as I had been taking Biotin I requested a retest after removing the bitoin from my daily meds.
The retest showed I was still being over medicated, so I reduced my meds and requested a full blood pannel and thyroid antibodies as this had never been tested.
After 8 weeks on a reduced dose, my Dr rings and tells me I am now under medicated, I explain that I've been told to reduce the dose, request another blood test in 8 weeks time.
The final blood test has shown once more that I am being over medicated still.
I was expecting to reduce my dose once I was taking my medications at 100%, but if I go down to 75mcg, that will be the same dose as I was on 10 years ago. The Dr can't seem to tell me what else might have changed to need the doseage reducing so much. I was told I have autoimunne thyroiditis, and was expecting my doses to only ever increase.
Having had this since a teenage I've never fully understood my symptoms, as I can't tell whats thyroid, whats normal adult tiredness and whats work related stress/anxiety.
I've included my recent blood results if anybody has any advice.
16/4/21 - (Taking 100mcg - reduced down to 75mcg on results)
Well, those antibody results are saying you have Hashi's - aka Autoimmune thyroiditis. Your doctor told you that. The problem is that doctors do not understand how Hashi's works! So, here's a brief run-down on Hashi's:
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
Having said that...
TSH 0.16miu/L (0.27 - 4.2)
free T4 16.9pmol/L (11 - 22)
Those labs are most definitely not showing over-medication. Your FT4 is only 53.64% through the range. How can you possibly be over-medicated??? In fact, you are only over-medicated if your FT3 is over-range. And that hasn't even been tested. So, your doctor was very, very wrong to reduce your dose. He only looked at the TSH, but that is a very poor guide to thyroid status once you are on thyroid hormone replacement. A low TSH does not automatically mean over-medication, it has to be looked at in conjunctiion with the other two results - FT4 and FT3 - and your FT3 is too low - you were actually under-medicated.
I've recently started supplementing magnesium,vitamin c, zinc, vitamin D bitoin with a multivitamin.
Did you get your vit D before you started taking vit D? Grave mistake to start supplementing without testing first.
But, are you saying there that you take those things plus a multi-vit? Or that they are contained in the multi-vit. Multi-vits are not recommended here. I could go into details about why, but that would make this a very, very long post!
So, over-all, yes, it would be a good idea to get private testing including FT3 and vit D, vit B12, folate, ferritin.
Thank you for the detailed reply, the multivitamin is all I'm taking. I will be looking into a private test. If the results come back as needing a medication change, do I take those back to the GP or do they offer a prescription?
How long would you advise stopping the vit D for before testing?
You shouldn't be taking a multivitamin anyway for all sorts of reasons.
* 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.
Well, you're very under-medicated. A TSH over 3 is still hypos. You will probably need a couple of increases in dose to bring it down, and raise your very low FT4/3.
You are currently undermedicated and need an increase in your dose of Levo, 25mcg now and retest in 6-8 weeks. Further increases may be necessary.
The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their reference ranges if that is where you feel well.
Vit D - 54 nmol/L (50-175)
This is low. The Vit D Society and Grassroots Health recommend a level of 100-150nmol. To reach this level you could supplement with 4,000-5,000iu D3. Retest in 3 months.
Once you have reached the recommended level then you will need a maintenance dose to keep it there, which may be 2,000iu, maybe more, maybe less, maybe more in winter than summer it's trial and error. Retesting twice a year is recommended to ensure you stay within the recommended range.
When taking D3 there are important cofactors needed.
D3 aids absorption of calcium from food and Vit K2-mk7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems.
Magnesium helps the body convert D3 into it's usable form.
Ferritin - 33 ug/L (15 - 155).
Magnesium comes in different forms so we need to.chooss the one that's most suitable for us:
Ferritin below 30 is indicative of iron deficiency. As this is so close to that level I would ask your GP to do an iron panel. Also ask for a full blood count as this will show if you have anaemia. You can have iron deficiency without anaemia.
It's not a good idea to self supplement, testing should be carried out and if your GP prescribes iron tablets he should monitor your levels regularly.
Managed to get a phone call from a different Dr today. She has suggested that I shouldn't have been reduced in the first place and increased my dose back upto 100mcg with further testing and scope to go back to 125mg.
Didn't seem keen for iron supplementation but has sent me for B12, Bone profile, full blood count, folate, electrolytes and creatanine, and transferritin. however can't do this for another 10 weeks as it's on the same form as my repeat thyroid bloods.
Have asked to be referred to endo, she was reluctant to that as well, but I made the case that I'd know been unstable and poorly medicated for a year by the time I'm back upto 125mcg and would like more support.
Good to hear this doctor has some sense, hopefully the increase will help.
Good too about the other tests, but do keep an eye on that ferritin level, it is so close to iron deficiency that it may slip below 30 and what will they do then?
I was told I have autoimunne thyroiditis, and was expecting my doses to only ever increase.
Autoimmune thyroiditis - known to patients as Hashimoto's - is where the immune system attacks and gradually destroys the thyroid. It is the most common cause of hypothyroidism.
Fluctuations in symptoms and test results are common with Hashi's. You may need to adjust your dose up or down according to your needs at the time.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
None of your test results posted above show overmedication. Presumably the GP is looking just at TSH and with it being low has decided you are overmedicated. However, TSH is not a thyroid hormone, it is a pituitary hormone. The thyroid hormones are T4 and T3 and it's the FT3 result which tells us if we are overmedicated. Obviously you've not had FT3 tested but it's very likely that if FT3 was high then FT4 would be too and none of your FT4 results are over range.
I'm wondering whether it may be worth buying a private test to check T3 and vitamin levels, or how to push for a endo refferal with GP.
Good idea, this will give a full picture and what's needed especially when Hashi's is present as it tends to cause gut/absorption problems which often leads to low nutrient levels or deficiencies.
Comparable full Thyroid and Vitamin test bundles as follows:
Both tests include the full thyroid and vitamin panel and both can be done either by fingerprick or venous blood draw (extra charge for that).They are basically the same test with just a few small differences:
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
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.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* 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.
If you want tips on how to do a fingerprick test, please ask.
As for a referral to an endo, many members have found this to be counter-productive. Most endos are diabetes specialists and know little to nothing about treating hypothyroidism, often making things a lot worse for the patient. Best to get the full testing done, post results with ranges on the forum for comment then take it from there.
Thank you for the adivce. I have been following advice re: early blood draw and fasting.
I'm going to go for the Medicheck pannel, how do I take those results back to my GP to change my prescription. So frustrating that we need to sort this ourselves rather than through drs.
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication 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.
So from your most recent results you could say that as your FT4 is only just over half way through range there is plenty of room for an increase in dose to see if it helps.
I can't see that your over medicated on any of those results. Your t4 is always in range. I wonder where your T3 is? Really worth getting full tests done privately so you know where you are then post here for more advice.
I found a 50% off discount code for Thriva. Getting Vitamin D, FT3. FT4, antibodies, advanced iron and B12 + folate. Hopefully will get a fuller picture of what's happening. Just hope my Dr will take them on board.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Do I need to change my dose of T4?
Endo stopped my thyroid medication
Thoughts / help with New results since rise in Levo medication. 
My blood results after 9 weeks on 100mcg
