Struggling to get my dosage correct.: Hello... - Thyroid UK

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Struggling to get my dosage correct.

hollyrosi profile image

Hello everyone,

I'd like to know if anyone on here knows why i would have a low TSH with low t4 please ?

I am currently taking 62.5 levo after reducing from 75 under order from my endocrinologist. He said my tsh was too low 0.3. sorry i do not have the exact range, although I do know it was out if range as I checked with him at the time. However my FT4 was 14 range 11 -22 and FT3 was 3.8 range 3-6.

I've been struggling to get pregnant since diagnosis. Compared to some other ladies I know who take levothyroxine, I struggle more than any of them with symptoms of either hypo hyper, put together. When I take 75 for long enough, or even when I have tried 100 over the years, I have become very agitated, angry, hungry all the time, exhausted, chest painy, blood pressure red faced, and my tsh goes to 0.1. They then lower my dosage...

I feel like I'm stuck between a rock and a hard place ! right now on 62.5 I feel tired and looo tired and puffy in the face. classic hypo symptoms for me along with painful periods which is a new thing that came with the lower dose.

I have recently had a blood test which showed I needed iron tablets so I've been taking those for a week or so.

please can anyone help?

60 Replies
SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

See you were diagnosed after quitting smoking…suggests autoimmune thyroid disease

Also about 90% of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Have you had TPO and TG thyroid antibodies tested

ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12

When were these last tested

You say iron/ferritin are low

How low

Have you had full iron panel test for anaemia

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Do you always get same brand levothyroxine at each prescription

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 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

List of private testing options

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

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...

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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

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 too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

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...

hollyrosi profile image
hollyrosi in reply to SlowDragon

thank you

yes its autoimmune. antibodies - 50 but after checking previous test results,I had this before quitting. but smoking helped it somewhat

I'm not sure with regards to iron. all I know is it was off the bottom of the scale and so prescribed ferritin.

can low iron or vitmains cause low tsh and low t4 ?

the t4 was actually 12 not 14

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

ALWAYS get actual results and ranges on all blood test results

Regularly retest vitamin D, folate, b12 and ferritin

It can take many months to improve low iron/ferritin

Low vitamin levels tend to lower TSH

What were most recent vitamin D, folate and B12 results

What vitamin supplements are you currently taking apart from iron

Have you had coeliac blood test done

Are you now on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

Most important results are ALWAYS Ft3 followed by Ft4

Most/many patients on levothyroxine need Ft4 and Ft3 at least 50-60% through range when adequately treated

TSH is often low/suppressed when adequately treated

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

FT4 12 range 11 -22

FT3 3.8 range 3-6.

Currently

Ft4 is 9% through range

Ft3 26% through range

Are you taking any T3 alongside levothyroxine?

Almost any dose of T3 will suppress TSH

its definitely an ongoing thing for me. the only time I had decent results was when i was still smoking 3 cigarettes a day. id become hypo years before when I first cut my cigarettes down with a tsh of 12 and began thyroxine. but I still had the 3 cigarettes a day... (strange addiction thing). my results a that time showed t4 at the higher end end where it should be and a higher t3. with same tsh.After stopping those 3 , I felt awful again and my thyroid labs have always showed low tsh and low t4. that has been for 2 1/2 years.

I thought that low t4 and low tsh might indicate a pituitary problem? if my t4 is low shouldn't my pituitary be making tsh?

I always take my levo correctly and when I have a test coming up make sure its in the am, without my pill.

TSH is often low/suppressed when adequately treated

I understand that because I'm autoimmune that my tsh won't behave properly and I understand my tsh is suppressed but my t4 is also low and I have hypo symptoms.

ill find out about the vitamins you suggested.

will the low iron tests reveal anything that could explain this for me ?

I'm not taking any T3

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

If your Ft4 is low then you are under medicated, not on high enough dose levothyroxine

That’s not surprising on only 75mcg, as it’s only one step up from starter dose

Being under medicated for thyroid results in low stomach acid, leads to poor nutrient absorption and low vitamin levels as direct result

Approx how much do you weigh in kilo

sadst8 profile image
sadst8 in reply to SlowDragon

I'm in the US, and I fail to understand the addiction you in UK have to scrutinizing TSH. To me, this is just another number in my blood-test spectrum and I just check to see if it's "in-range"...no further question. Why's it such a Big Deal to you folks?

hollyrosi profile image
hollyrosi in reply to sadst8

hi sorry to butt in on your reply to SlowDragon

but would you also suggest I increase then ? I know you guys can't actually tell me to increase, and if I do it'll be my decision, but do you think i should with a tsh that low ? its actually below range

I think i look at tsh so much because it was the tsh result that got me a hypo diagnosis. my t4 was bottom end of the range but still in range, but my tsh was 12.

so I assumed that it would have some significance the other way around.

I just want to feel well again.

greygoose profile image
greygoose in reply to hollyrosi

The TSH ceases to be of much importance once it gets down to about 1. Above that probably means you're under-medicated, but below it doesn't give you very much indication of where your thyroid hormone levels lie. So, as your TSH is below 1, just forget it. It's the FT3 that is the most important number, followed by the FT4. It's just a pity that doctors don't know that! :)

helvella profile image
helvellaAdministrator in reply to sadst8

We in the UK do not have an addiction to looking at TSH. It is our medics who have that.

Given that many people get only a TSH result when a Thyroid Function Test has been requested, individual doctors, especially GPs, have nothing else to go on. Although very wrong, that is the how it is.

SlowDragon profile image
SlowDragonAdministrator in reply to sadst8

U.K. medics generally TSH obsessed …..though not all are

As are many USA medics

Almost any dose of T3 will suppress TSH

Levothyroxine frequently results in very low/suppressed TSH, especially if vitamin levels are poor and/or Hashimoto’s and/or gluten intolerance

Batty1 profile image
Batty1 in reply to sadst8

Im not sure what post your reading unless its new posters who have just been diagnosed and talks about TSH on test but the old timers here don’t hold TSH in high regards but everyone talks about TSH because thats one of the things Endos or GPs test so people talk about it including me who is also in the US because thats one of the things my Endo test and he is a professor at JHU and still loves TSH test.

I weigh 58 kilos roughly.

if i took an extra 25 levo when my tsh is 0.3 ,as you suggest im undermedicated , what will happen?

in the past when I have increased by 25 increments my tsh has dropped significantly

greygoose profile image
greygoose in reply to hollyrosi

Yes, it would. But we don't care about the TSH.

If you increase your levo by 25 mcg again, what will happen is that your FT4 will rise. That will give you more T4 to convert to T3, so hopefully, your FT3 will also rise. Which is the name of the game. Forget the TSH! :)

Hi hollyrosi

Your endo isn’t a diabetes specialist by any chance? 🤔. To be so obsessed with TSH with no concern for FT4 suggests they are working off a crib sheet 😱. They will have a web profile for the hospital they work at 😉.

There are apparently precious few endos who specialise in the thyroid. You have some great advice above - lots to read - but do. I was very ill last year thanks to being completely mismanaged after diagnosis with Hashimoto’s by a GP. I found Thyroid UK and SlowDragon and other forum members shared their experiences and advice- I am well thanks to them - not the medical profession.

Be prepared to be your own health advocate.

hi thanks for this !! i had a little look on the website and it says he specialises in Endocrinology and Metabolic Medicine.

Do you also think i should increase then? I havent done so already because my tsh is so low.

I really thought people would be telling me its a pituitary problem, im so shocked to hear i could need an increase with such a low tsh.

I understand tsh doesn't behave the same way in me anymore compared to when I was healthy, but increasing with a tsh of 0.3 scares me a bit.

I was wondering if there's anything else causing it? in the past my tsh has been 1 , with an ft4 of 20 and I felt really good, perfect even. now, its gone a bit weird and I really feel it. hopefully it'll be a case of low vitamins

thank you both for your help so far. I've read lots of books about my condition so I really should know better than to let the vitamins slip ..

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

Common with Hashimoto’s to have some degree of central hypothyroidism (in that TSH is sluggish/non responsive)

Hashimoto’s frequently gets worse after quitting smoking….but taking smoking up again doesn’t put it back in the box

Regularly retest vitamin levels and maintain all four at optimal levels is essential

How to get TSH as high as possible

thyroidpatients.ca/2020/01/...

Don’t rely on TSH

ncbi.nlm.nih.gov/pubmed/309...

Canadian Thyroid association

Low TSH

thyroidpatients.ca/rational...

greygoose profile image
greygoose in reply to hollyrosi

hollyrosi, you have nothing to be scared of.

The TSH has two jobs - just two, no more!

a) it stimulates the thyroid to produce more thyroid hormone - hence its name: Thyroid Stimulating Hormone

b) it influences conversion of T4 to T3.

Now, a) no-longer concerns you because you are taking exogenous hormone so your thyroid no-longer needs stimulation, because it no-longer needs to make any hormone.

b) does still concern you, but it's not your main problem. Hashi's people are naturally poor converters, anyway, so having a higher TSH probably wouldn't make much difference to your conversion rate. And, quite apart from that, many people appear to convert perfectly well without an in-range TSH.

What happens is this: the pituitary produces TSH according to how much thyroid hormone - both T4 and T3 - it senses in the blood. If T4 and/or T3 are low, the pituitary increases its output of TSH to stimulate the thyroid, etc.

When the pituitary senses that there is enough thyroid hormone in the blood, it reduces its output of TSH. Now, one of the problems is that the pituitary is always first served when it comes to thyroid hormones. So, whilst it might be perfectly satisfied with the levels of thyroid hormone it's getting, other parts of the body might not. So, you can have a very low TSH, but still have a load of hypo symptoms.

But, contrary to what doctors believe - if they do actually believe it, and I sometimes wonder - the TSH does not affect the heart or the bones. This myth came about from some sort of confused 'science' that lead everybody up the garden path, putting two and two together and coming up with 3.5! We, the patients, who have to put up with our doctors' mistaken beliefs, and therefore do our own research, know the true story: a low TSH, in and of itself, will not cause heartattacks, strokes or osteoporosis. Longterm very high FT3 might increase your chances of this things, though, so that's one of the reasons that the FT3 is the most important number. :)

Batty1 profile image
Batty1 in reply to hollyrosi

Do you take any other medications?

hollyrosi profile image
hollyrosi in reply to Batty1

Batty1 no nothing at all. I have been perfectly healthy up until all this 🙈

Stourie profile image
Stourie in reply to hollyrosi

Hi, please don’t worry about your tsh. It must be just out of range. Since I started on t3 at the end of 2010 my tsh has been suppressed at 0.01 and I feel well. My doctors and endos aren’t happy but I am. Take care Jo xx

I couldn't agree with you more. Thank you for saying what I and many other members feel. I for one am doing so much better since joining this Great Forum. The Forum has been G-D sent for me. Thank You.

We are the lucky ones 😘👍

I don't know why your TSH is that low with such low ft4/3 results , but in terms of 'what to do ?' .....

You have 3 markers to look at to help you decide.... TSH, and T4/3 levels , and Symptoms .

~ If there is a pituitary problem meaning the TSH didn't rise appropriately in response to the low T4/3 levels .... then the standard course of action is to ignore the inappropriate TSH result and adjust dose by looking at fT4 and fT3 levels and symptoms.... so you would increase dose.

~ If there isn't a pituitary problem and the lower than expected TSH result is for a different reason, then the fT4 and fT3 results are both so low that it's clear trying a dose increase would certainly do no harm. It's is not a low TSH level in isolation that is responsible for any increased risks .. it is low TSH associated with high fT4 /3 that may indicate increased risk ... because of high T4/3 ... you are in no danger of having too high T4 / T3 at the moment ... so you would increase dose.

~ If you feel your symptoms are similar to when undermedicated .. then this would confirm that it's sensible to try an increased dose.

If you've previously felt overmedicated on higher doses .. then it makes sense to only increase it very slightly.

If you felt OK when TSH was 0,3 on 75mcg before the most recent reduction to 62.5mcg ,then say you want to "trial" going back to 75mcg to see if your symptoms improve.

To counteract the endo saying " no increase because low TSH is risky" , use this argument:

~ 0.3 is not really so low , 0.003 is really low ....and there is a large long term study of people on Levo showing no increased risks for TSH 0.04 -0.4 (below range but not supressed)over risks for TSH 0.4 -4. (in range)

Your 0.3 was well within that 0.04 -0.4 bracket, so unless it went below 0,04 that study showed you have no increased risks for heart or bone problems.

That study is here: academic.oup.com/jcem/artic...

~ Also see my reply to this : healthunlocked.com/thyroidu... post for links to lots more posts discussing 'risks' (or not ) of low TSH, and putting it into perspective Vs Quality of life .

hollyrosi profile image
hollyrosi in reply to tattybogle

thank you so much for this. That makes perfect sense, thank you for clarifying everything !

I've been so so confused to the point of despair with not feeling well and the doctors telling me different things all the time. Also, because I have recurrent miscarriage, it means I see lots of different doctors and nurses and they all give me very conflicting advice. So I apologise if I sound all over the place on this post. One doctor will say tsh too low, harmful for early pregnancy, another docotr will say its fine. then another miscarriage later a nurse will look at my results and say why did you increase or reduce etc. Its been a crazy 2 years.

I'm going to go through the links people kindly posted for me on here and keep trying to get sorted.

tattybogle profile image
tattybogle in reply to hollyrosi

Before you take anybody's opinion about your TSH level seriously in future , no matter if its the nurse or the top consultant ..... you should check if they have actually thought about and understood the subject properly , or if they are just repeating the simplistic 'rules' they have been taught about thyroid treatment (that TSH is King... it's not )

Probably 95 out of 100 of them are just repeating what they were taught without ever applying any further thought / observations of their own.

So when they get conflicting/confusing results like yours, instead of being honest and saying "that's curious, i wonder why ?" .....they just pick a bit from their text book and repeat it to you .. and the next one picks a different bit...so you think you're getting conflicting 'opinions' ... but in order for something to be an 'opinion' they would have had to 'think' about it .

But the problem is they were all taught that "treating hypothyroidism is very simple , it doesn't require you to think about it further than 'in range TSH' and any other problems are either the patient not taking Levo correctly , or the patient believing ALL their symptoms are because of thyroid when they are not" .

So , do some more reading, let it sink in slowly, and then trust your own logic.. by that time you'll probably have thought about the subject much more than the next consultant who offers you an 'opinion' on it .

hollyrosi profile image
hollyrosi in reply to tattybogle

thank you so much 😊 !

tatybogle is good! Great advice

it is! very lucky 🙂

Fantastic- advice 😊👍

hollyrosi profile image
hollyrosi in reply to tattybogle

I looked at the link you sent me about how to get your tsh higher and its mentioned that biotin could lower tsh slightly. I do take biotin vitmains everyday

do you think I'd benefit from a reverse t3 test? tattybogle

helvella profile image
helvellaAdministrator in reply to hollyrosi

Biotin can affect some tests - rather than the actual levels (though a small effect on actual levels is possible).

Taking significant doses of biotin will cause some tests to return high or low results - TSH, FT4 and FT3 can all be affected. But it is usually higher doses that are a problem. And not all tests are affected at all.

tattybogle profile image
tattybogle in reply to hollyrosi

greygoose can usually provide a more detailed reply than me about rT3 testing, but

my understanding about reverse T3 is that it's a bit of a red herring, because it can be high for loads and loads of varied reasons, and the only reason that would tell us what to do about it is if it's gone high because of too high fT4 . But when that is the reason we can already tell that from looking at the fT4 test . so no real need for the reverseT3 test.And 'too high fT4' is definitely not a problem you''ve got . So even if you paid loads of money to get a reverse T3 test , and even if it was sky high ... you would have no idea why or what to do about it .. so no point doing it.

greygoose profile image
greygoose in reply to tattybogle

Very well explained, Tatty!

I would just add that having high rT3 does not affect the TSH, as far as I know. It really has very little to do with anything. rT3 is inert, and only stays in the body for a couple of hours before it is converted into T2, then T1, and then the iodine atoms are recycled in the body.

So, even if your rT3 is high, it would have nothing to do with your present problems. The test is long and expensive and wouldn't add any extra knowlege about what is going on with you. Seems to me, your best bet is to try and get an increase in levo, and at the same time, work on optimising your nutrients. And, most important of all: forget about the TSH. :)

Hi again hollyrosi

Sorry this may be the longest post I have ever written but bare with me - make yourself a brew. 😂

NHS guidelines suggest Levothyroxine is dosed by weight of 1.6 µg per kilogram.

58 x1.6 = 92.8 µg

This calculation is a guide only, but along with symptoms strongly suggests under medication. Is your Endo treating the lab results or treating you? In fact is your Endo treating TSH at the expense of every other part of you? And his title is very amorphous doesn’t really give very much away does it did the description give you any more detail?

If you have had a sweet spot before something has gone awry, and the medication (and vitamins?) is most likely in this instance but you need to consider other factors. Here we go, I will try and list as many as I can think of.

Look at SlowDragon’s advice, vitamins being out of kilter can play havoc with your metabolism. To get the most out of what ever dose of levothyroxine you are on you need to get your metabolism to work optimally.

If the doctors keep mucking about with your dosing this can also make it difficult to get back to the sweet spot. Lots of anecdotal information in peoples posts at having had this done to them and being unable to get back to the sweet spot or very difficult to get there. Treating lab results not the patient yet again…..

Weight and/or general health - changes in diet activity.

You can also have an illness that will knock you off and it can take a very long time to get back to the sweet spot.

Medication additions for another issue can have profound effects and don’t presume the GP or endo will be cognisant of this.

Also brand changes of Levothyroxine can affect you. I’m on just Teva. A lot of people do not get on with Teva, but I’m lucky, I do and it means that I’ve got a lacto free version of Levothyroxine. If the pharmacy jump about giving you any old brand that they’ve got in at the time this could have an effect on your health as well. If it’s not something you’ve noticed you might have to go and consult with your local pharmacy to find out all the brands that they have been giving you if one hasn’t been assigned.

I’m lucky our local surgery has a meds management team who are great and I can talk to them directly and I do get sense from them more so than the GPs actually as a whole. With a simple explanation that I was avoiding lactose and apparently it’s a good idea to be on the same brand all the time anyway, the meds management team put on my notes that Teva was the required brand. Also doubled up by asking the Pharmacy to put the same note on my records there.

I have had to check a few times and give meds back because the pharmacist has not read the information properly but I think we’ve got over that hump now. I have had to wait a day or so whilst they correct the error but I have never given in and just taking whatever is in the bag and I would advise you to do the same.

Reduce the variables then it’s easier to see what the cause is. In science when we are conducting experiments we change one variable at a time to determine the effect. I see no reason to treat myself any differently. I have an environmental science background but there are some overarching principles that can be applied to every aspect of science medical included. Looking at one variable at a time is one of those principles.

Have a break have a brew! 😊👍 Next bit is context.

TSH. Hmmm!🤔

GPs and badly trained Endos are obsessed with TSH because they don’t know any better. Don’t presume they know more than you and if they are putting TSH above how you feel then I certainly would say they don’t know more than you.

Your symptoms are the most important diagnostic tool.

Reading around on this forum I’ve noticed this TSH being below range or having some suppression is to be expected.. TSH thyroid stimulating hormone is produced by the pituitary in response to a lack of thyroid hormones in blood stream .

Good analogy is if you take the oil dipstick in your car engine out, give it a wipe clean then dip it in again and when you pull it out there is oil at the full mark on the dip stick you wouldn’t add any more oil.

Many doctors/consultants are dosing by TSH range - a completely wrong strategy when you read around the subject and only baffling if you don’t take into consideration most of these arse policies are born out of a general lack of understanding and a drive to over simplify and the biggy - save money 😱

Feeling well or good on paper?

There is also the consideration of weighing up what you want. Do you want your bloods to be measured against a range that does not bring you to good health, but looks good on paper, or do you actually want to feel well? The many Endos and most GPs will want it to look good on paper.

I need to do another blood test and I’m pretty sure it will show that my TSH is suppressed, but I do not care because I feel great. I will not trade how I feel now to how I felt when all my bloods were within range and I felt damned awful and wanted to die.

You have to take everything in context there may be an increased risk of some issues, but that is by no means nailed down at this stage. Also they’re not looking at the issues of under medication and I think the health implications for that are far greater! But doctors do not tend to look at the bigger picture they are reductionist in their approach. Treating the lab results rather than the patient.

Even if it were to be proven that there was a very high risk of complications through over medication, which I don’t feel I am suffering from at the moment because my FT3 is within range (going by Toft’s explanation) the trade off for me is simple I’m living now and I’m blooming well enjoying myself! If it has an effect on any part of my body when I’m older I couldn’t give a damn, I’m not eeking out an existence - I’m living now.

After seeing the way the GPs dragged out my mother and fathers decline and extended their misery and their suffering, I have no desire to let them do that to me. (See profile) 😔👍

Ping-Pong!

I have to add a bit of context to how most GPs and a good few consultants interpret blood tests - they generally don’t. They read off the lab sheets. The labs push through hundreds, if not thousands of samples in a week and the results are printed out on a general information sheet. There is nothing bespoke about it at all. When my lab results have been in range I have never been asked how I actually feel - I’ve just been told the results are ‘normal’. The range will mean different things to different people - we do not all respond to these tests in the same way.

The trouble is the majority of GPs (and some Endos) don’t understand what the range is there for - it’s a guide only! Sadly most think the range is a ‘cup’ and that the patient is a ‘ping-pong ball’ and if they get the ping-pong ball in the cup they win a prize.

They simply do not understand that you can be on completely different doses at either end of the range and be hypo (at the lower end) and be optimal and well (at the upper end) OR, heaven forbid, because of other confounding factors you may sit outside the top of the range before you feel well OR (panic stations) the range might not apply at all! 😱😂

It is also important to distinguish between ‘normal’ and optimal. The term ‘normal’ (note my use of the inverted commas) it is a misused term that you should be wary of. What should be aimed for is OPTIMAL.

Only two little words, but they mean very different things. In fact one could say ‘normal’ is meaningless. GPs who don’t know what they are doing generally tell you that you are ‘normal’ if you are in range.

Symptoms should be the most important diagnostic tool, but it sits at the bottom of the list as an annoyance. Nothing annoys a doctor more than having a lovely set of blood results, all ‘normal’ and the damned patient goes and spoils it all by having symptoms! 😂

Ever been told by a GP “Your symptoms should have cleared up by now” or something similar and made to feel the failure for not having responded to their rubbish treatment??

Vitamins need to be higher than just in the bottom of the range SlowDragon has given you loads of info on this - the same info she gave me 😊. GPs in the main have no idea on this either - refer back to cup/ping-ping ball scenario.

Keep Records (your own records)

Also, I cannot emphasis this enough. Get PRINTED results, don’t rely on Patient Access- my Patient Access is patchy and things have been altered/disappeared (yes really). I have screenshots to prove it 🤔. I also have my complete set of tests- get copies of everything keep records 😊👍.

I keep a diary of sorts, it started when I realised I had been under medicated for first six months after diagnosis. GP did not know what they were doing and made me very ill.

At that point I decided to take control of my own health and started reading around the thyroid, a book, some papers and loads on here and joined the forum. It’s a fair old bit of work to get up to speed - but worth it. Reading other people’s experiences and the advice given on this forum has definitely been one of the most valuable sources to understand my condition.

I used my diary to note changes in my condition and symptoms that emerged every time I needed a dose increase. The timings of needing dose increases were very different from the arbitrary come back in three months I was told by the GP. You can read the detail on my story if you go to my profile. However, keeping this information allows you to look back and see when things changed. If I were to have a significant illness or life event, now I would pop it in my diary. I don’t write in it every day, it’s not a “dear diary daily record” it’s just for the relevant information, as I perceive it. It has been invaluable. I can look back and tell you the symptoms that disappeared first as my dose increases were applied and the last and most embarrassing symptom left once I was on a therapeutic dose.

It felt like there was a priority for the body as to what it was going to get functioning, first - very interesting, but something I would’ve missed had I not actually written it down at the time.

Sorry again for length of post.

And breath!….. 😊👍

wow thank you for this. tonight after work im going tonight sit and read all of this very carefully, ive only had chance to look through very quickly at the moment.

there's so much info in there, thank you!!!!!

And getting a diary i think will help me a lot.

I do have another question for you guys !! What kind of results woudl you expect to see for someone with too much reverse t3 ?

greygoose profile image
greygoose in reply to hollyrosi

I don't know if this question has been answered to your satisfaction elsewhere, because I haven't read all the replies, but the short answer is: depends why you have too much rT3. As has been mentioned before, there are many, many possible causes of excess rT3, and only one of them has anything to do with thyroid. But, if excess rT3 is due to high FT4, then you would expect to see high FT4 and low FT3. The TSH could be anywhere.

rT3 is an absolute red herring, so don't waste any more time on it. :)

hollyrosi profile image
hollyrosi in reply to greygoose

ok, thank you so much

greygoose profile image
greygoose in reply to hollyrosi

You're welcome.

I'm so glad your brain works again , turns out it's a very useful analytical brain. Your ping pong Thesis is coming along nicely :) and never fails to make me smile , in fact i''m tempted to start making a homemade 'prize' for my GP.

🤣 love it! Your doctor lives just down the road and think I might have a reputation now though I have never dealt directly with him re my own issues - he almost ducks when he sees me 😂🤣😂🤣

:)

Honestly- I’ve never had to consider it, but others may be able to advise.

I do so hope you get back to your sweet spot 🤗. Take charge!

thank you so so much !!!!! looking forward to a good read of all this tonight 🤓 ☕

😂👍

And there’s more re suppressed TSH ( just a summary not full paper 😊👍

pubmed.ncbi.nlm.nih.gov/314...

Your iron deficiency may be keeping your TSH lower than it should be. And it will certainly be making your hypothyroid symptoms worse and it will also reduce your tolerance of thyroid hormones such as Levo.

Title : The Importance of Iron and Ferritin in Hypothyroidism

Link : thyroiduk.org/if-you-are-hy...

Do you have your iron and ferritin (iron stores) results? You should ask your surgery for a copy of your results for anything and everything that has been tested, including anything iron-related. Even better would be to ask for access online.

I'm assuming that you aren't just iron-deficient but could be anaemic as well. People can be iron deficient with or without anaemia, but doctors usually don't treat unless the patient is iron deficient AND anaemic - which is not the right thing to do. Iron deficiency needs to be treated with or without anaemia.

onlinelibrary.wiley.com/doi...

ncbi.nlm.nih.gov/labs/pmc/a...

Iron deficiency also has unwanted effects on women who are still menstruating :

ncbi.nlm.nih.gov/labs/pmc/a...

What iron supplements have you been prescribed? And at what dose? Doctors are good at dosing iron deficiency for a couple of months then they stop prescribing without even knowing if the patient's iron and ferritin have risen, or risen far enough.

Some things you need to know about levels of iron and ferritin :

1) If they are very low it may take many months, possibly more than a year, to raise levels to optimal (not just "in range") - a lot of people absorb iron poorly.

2) It is important not to raise iron and/or ferritin above optimal because it is damaging in overdose.

3) Optimal iron results - rt3-adrenals.org/Iron_test_...

4) Iron supplements can be bought from pharmacies in the UK without prescription but a pharmacist has to agree. I've only been refused once - I just went to a different pharmacy and got what I wanted there.

5) For info on iron supplements that are available and the dosages, see this post I wrote for another member :

healthunlocked.com/thyroidu...

6) Problems that might arise if iron levels go too high and why regular testing is essential :

healthunlocked.com/thyroidu...

7) Private finger-prick testing for iron/ferritin - no doctor required :

medichecks.com/iron-tests/i...

See discount codes for money off :

thyroiduk.org/help-and-supp...

8) You can always post and ask for advice on test results for nutrients or thyroid if you need it. Nutrient deficiencies are extremely common in hypothyroidism. The symptoms caused by nutrient deficiencies are very similar to those for thyroid disease. There is a lot of overlap. So keeping nutrient levels as close to optimal is essential. Optimal varies according to the nutrient - don't assume that optimal is always top of the range or middle of the range.

hollyrosi profile image
hollyrosi in reply to humanbean

hi ! I have just found the letter with my iron results.it says ferritin 5 MCG and hemoglobin 99 g/l

and a prescription for some iron tablets

do these results show a problem? humanbean tattybogle

humanbean profile image
humanbean in reply to hollyrosi

Does the letter have the reference ranges? Your results look dreadful.

If the reference ranges are standard for ferritin and haemoglobin then your ferritin needs to rise to about 90 - 110mcg/L and your haemoglobin needs to rise to about 120g/L. So I think you can expect to be on iron supplements for quite a long time because you have a long way to go.

Which iron supplement have you been prescribed? And at what dose?

hollyrosi profile image
hollyrosi in reply to humanbean

I have been prescribed 322mg ferrous fumarate.

the hemoglobin range is 120 - 180

and the ferritin is 24 - 336

how long would you say it takes to build iron stores back up ? and would you say this has had an effect on me feeling unwell all the time on levo recently

humanbean profile image
humanbean in reply to hollyrosi

How are you coping with the iron supplement? Iron is something that many people struggle to tolerate. I think your doctor should definitely refer you for an iron transfusion. He or she was being sadistic by not suggesting it.

Another possibility is that you could pay to have an iron transfusion privately. I have never done it myself, so can't say what the costs are or how easy they are to arrange. I know some people on the forum have had one done, so you could write another post and ask for info on it.

hollyrosi profile image
hollyrosi in reply to humanbean

i was about to ask about paying privately, this if definitely something ill sort out.I have had iron tablets in the past that have given me stomach ache but I dont have any side effects at all so far.

If im honest I think a lot of the doctors have been a bit negligent towards me during this whole thyroid and miscarriage journey. I often feel fobbed off and unheard, they just talk over you

humanbean profile image
humanbean in reply to hollyrosi

If im honest I think a lot of the doctors have been a bit negligent towards me during this whole thyroid and miscarriage journey. I often feel fobbed off and unheard, they just talk over you

I would agree with you. To have a haemoglobin of 99 and a ferritin of 5 definitely suggests repeated neglect. I think you should be looking for a new doctor.

humanbean profile image
humanbean in reply to hollyrosi

Actually, with such dreadful results your doctor should have referred you to haematology for an iron transfusion. It would raise your levels much more quickly instead of making you suffer for months.

You could write a letter to your GP and ask to be referred, so you don't have to wait for ages for an appointment.

I would say that your ferritin levels and anaemia are the cause of your poor Levo tolerance.

I would also suggest that you delay trying to conceive for 12 - 18 months. If your iron levels are so bad the likelihood is that other levels are also dreadful. You do really need to be as healthy as possible before conceiving. Low levels of nutrients will make it much harder to conceive and will increase your chances of miscarrying.

Also, with such low levels of nutrients, if you ever did conceive and carry a child to term, they might not be as healthy as you would want them to be.

hollyrosi profile image
hollyrosi in reply to humanbean

I did wonder whether I was suffering with low iron due to the miscarriages I've had. without going into too much detail it could be a cause couldn't it ?

thanks for this advice, we have definitely delayed until im fit and healthy

humanbean profile image
humanbean in reply to hollyrosi

I had five attempts at IVF in the 1990s. They told me that my thyroid was "borderline underactive" but I didn't need treatment. I took their word for it. They never mentioned iron although I was frequently low in iron, so I doubt my levels were good. I got pregnant three times but lost them all very early in the pregnancy.

It's ancient history now so the subject doesn't upset me any more - I'm not looking for sympathy. But I do try and warn people of the problems of not getting as many things right before conception as possible.

hollyrosi profile image
hollyrosi in reply to humanbean

really sorry you've gone through that. Mine are all early too, no further than 6 weeks.

SlowDragon profile image
SlowDragonAdministrator in reply to hollyrosi

As well as getting iron and ferritin levels optimal BEFORE conception

Essential to regularly retest folate and B12 levels

Vitamin D test twice year when supplementing

Are you aware that levothyroxine dose should be increased as soon as conception is confirmed…..don’t wait to see GP/fertility consultant

Before even considering TTC levels and vitamins need to be stable

verywellhealth.com/infertil...

.

Pregnancy guidelines

thyroiduk.org/having-a-baby-2/

gp-update.co.uk/files/docs/...

IMPORTANT See pages 7&8

btf-thyroid.org/Handlers/Do...

thyroidpharmacist.com/artic...

hollyrosi profile image
hollyrosi in reply to SlowDragon

Some of the doctors have said the miscarriages are due to my age (35), but I feel like its my poor health and low thyroid causing them.My partner and I are on a mission to do our best to get me healthy this year above anything, because its affecting nearly every aspect of my life including work because im just so so tired!

i was aware I need to increase as soon as I'm pregnant. For 3 of them I increased and didnt bother for the 4th.

My partner and I have been tested for everything under the sun fertility wise and everything has come back normal, but i know that's for another forum.

humanbean profile image
humanbean in reply to hollyrosi

Of course they will blame you - all while neglecting the obvious problems you have with thyroid and iron (and possibly other nutrients too).

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