COMPLETELY CONFUSED and in Need of Help, please

[anniec11]

In June last year I had a blood test via the NHS and I was promptly called into the GP surgery and told that 'they' had been over-medicating me and I must reduce my dose of Levo straight away. I was on 125 mcg, and she suggested I should go down to 0.75. mcg. She also sent me for an Osteoporosis scan as she said that I was in danger of suffering from it, as well as heart disease, because of overdosing on Levo. (I was never told the result of the Bone density scan and they won’t tell me over the phone!) According to my online Medical Record, all but two tests have come back as ABNORMAL ! Everyone one since 1993! However, these results all show TSH ONLY. I used to be on 150 mcg for many years but was told previously to reduce my dose to 125 mcg, until now, when I am on 0.75 mcg only.

Stupidly, I did as GP said. But I now suffer from extreme lethargy, serious brain fog and also now considerable hair loss (evenly all over) and dry skin. It is the hair loss and the brain fog that are very worrying and hard to live with. Although I AM 74 yrs., I definitely do not feel it is old age and dementia (I WOULD say that!!), which the GP would undoubtedly attribute all symptoms to, as he does without fail. LOL

To clarify things here, In June last year when I was called in for taking too high a dose of Levo 125 mcg, the NHS test returned the following result (AND AM SURPRISED THEY TESTED FOR t3):

Plasma TSH Level <0.01 mU/L (0.30 – 4.20 mU/L)

Plasma Free T4 Level 20.2 pm0l/L (9.00 – 19.00 pmol/L)

Plasma free T3 Level 4.8 pmol/L ( 2.60 – 5.70 pmol/L)

I then reduced the dose to 75 mcg and my private Blue Horizon test in August showed:

Hs-CRP 2.11 <5.0 mg/L

Ferritin 62.6 13 – 150 ug/L

TSH 0.80 0.27-4.20 mLU/L

T4 Total 83.8 66-181 nmol/L

Free T4 16.10 12.0 – 22.0 pmol/L

Free T3 3.31 3.1 – 6.8 pmol/L

Anti-thyroidperoxidase 18 <34 klU/L

Anti-Thyroglobulin 12 <115 “

Vitamin D (25 OH) L 44 Deficient <30; Insufficient 30-50 nmol/L

Vitamin B12 H 587 Deficient <145; Insufficient 145-300; Reduce dose <569 pmol/L

Serum Folate 9.82 8.83 – 60.8 nmol/L

I had been supplementing with B12 vitamins (Pure Nature, 1000 mcg) but clearly too often. I also used the Vit D Spray, although clearly not enough.

I didn’t feel good on the 75 mcg dose and thought that may have been because I have cut back too much, too quickly? (From 125 mcg to 75 mcg) and added 25 again to bring the dose up to 100 mcg at the beginning of December last year. (Perhaps completely wrongly?) I had a further blood test this month, January 2020, and I add the result above (sorry, meant to add it cronologically here, but it will not let me!)

I should add here that I am still on low dose of Sertraline (for the last 20 odd years) and because of a small Oesophageal bleed was put on Omeprazole 40 mg, but have cut that down to 10 mg as soon as I could).

It’s really quite embarrassing but I will have to admit I am completely confused now. So, I wonder if the knowledgeable people on here can spare me the time to read the above and explain where I might be going wrong? Does anything in the test results point to the Brain Fog? The awful (prickly scalp) Hair Loss? Total lack of energy? I know it’s a lot to ask, but I haven’t found a private Endo of any use and the GP’s in my practice are simply dismissive! THANKS A MILLION IN ADVANCE.

[misscliocat]

Ok, been here before... maybe a rhetorical question, but how far out do you space your labs from your T4? Just curious to see if that would cause a spike....

Also, don’t quote me but I was given setraline for a moment and thought it could cause a flux in thyroid however, I would ask the pharmacist... but yes, time of labs versus when taking medicine.. may shed some light.

[anniec11 in reply to misscliocat]

I'm sorry to say I don't actually know what exactly you mean by 'how far out do you space your Labs from T 4'.

[greygoose in reply to anniec11]

She means 'how long was the gap between your last dose of levo and the blood draw'. You should leave a gap of 24 hours to get an accurate reading of the normal circulating level of FT4. If you take your last dose too close to the blood draw, you will get a false high result. If you leave longer than 24 hours, you will get a false low.

Assuming that you left a 24 hour gap, your problem is not that you are over-medicated, but that you are a poor converter of T4 to T3. You need your FT4 slightly over-range in order to get enough T3 to make you well. But, doctors don't understand that, I'm afraid.

[anniec11 in reply to greygoose]

Hello greygoose, I did leave a gap of 24 hrs before blood draw (maybe even 25). So I couldn't understand the 'spike'.

[greygoose in reply to anniec11]

Well, hardly a spike, more like just slightly over-range. But, as I said, that's because you're a poor converter.

[anniec11 in reply to greygoose]

Lol... I think someone here called it a spike... hence my unprofessional reference. But I am glad you think that is actually correct for me... so, no need to try and get yhat down at all?? Sorry, if this seems a daft question.

[greygoose in reply to anniec11]

Well, the question is: what would happen to your FT3 if you lowered your levo?

It might be that your conversion would improve. But, would it improve enough to compensate for the loss of T3 due to lower intake of T4? That we don't know. But, how do you feel on this dose? If you feel well, then don't change anything. If you don't feel good, that will be down to the low FT3 rather than the high FT4. So, in that case, the solution would be to try and source some T3 and add a little to a lower dose of levo.

[Margaret]

I have had the same problem but I more or less medicate myself and fortunately my gp lets me, when first diagnosed along time ago nhs doctors kept telling me that I was with in the normal range . I think we know the symptoms of when we are under or over medicated. So if at all possible I would try and do what you’re body is telling you.

[SlowDragon Administrator]

Well you results on 125mcg don’t show over medication at all

FT3 is no where near top of range

Ft3 4.8 (2.6-5.7)

Ft3 was 71% through range

Yes your Ft4 was one point above top of range ....but when did you take last dose of levothyroxine before that blood test? If took it within 8 hours of blood test it’s a false high result

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, best not mentioned to GP or phlebotomist)

Is this how you did that test?

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

What vitamin supplements are you currently taking?

Ferritin hasn’t improved since august - was 62 ...now 56

Vitamin D improving from 44 to 55

Aiming to get to at least 80nmol by supplementing

Folate could be better

Suggest you change to taking a good quality daily vitamin B complex rather than just B12

This latest test in the picture

How long before test did you take levothyroxine ?

Ft3 is still low. Improving from August 3.3 ...now 4.1

[anniec11 in reply to SlowDragon]

Hi, thank you for your reply. Yes, I did leave 24 hrs before blood draw on all self tests. So the result surprised me.. grey goose mention my poor conversion of T 4 to T3, but I have no idea how to improve that ?? Also, what supplement do you suggest to improve Folate, please ?

[SlowDragon Administrator in reply to anniec11]

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

As this also contains B12 you may not need separate B12 supplements

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

How much vitamin D are you supplementing?

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

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

Links about iron and ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

drhedberg.com/ferritin-hypo...

restartmed.com/hypothyroidi...

Suggest you Retest again in another 8 weeks.

[anniec11 in reply to SlowDragon]

Thank you very much indeed for this. The only advice I simply cannot follow is the 'eating liver or Black Pudding' bit. Sorry, just can't get that down my throat. 😫

[SlowDragon Administrator in reply to anniec11]

You can hide liver inside shepherds pie, spaghetti Bol, curry etc

Yes I can’t stand black pudding either

[anniec11 in reply to SlowDragon]

Yes, I will retest again in 8 weeks. BUT... this last test (in the photo) was done as you describe above, but with my dose back up to 100 mcg. Any views on that would be much appreciated??

[SlowDragon Administrator in reply to anniec11]

Personally I think you will see at next test that you may still need small increase in levothyroxine....perhaps to 112mcg

But working on improving vitamin levels first

Eventually I would suspect you may be back on 125mcg

But it takes a very long time to recover from the metabolic shock of such huge 50mcg reduction in dose....as shown by your hair loss

Never ever agree to reducing dose without FULL Thyroid and vitamin testing first

[anniec11 in reply to SlowDragon]

Thank you, SlowDragon, for all your help! I certainly know that now... to my cost!! What would people do without this Group?? It's a life saver!!

[SlowDragon Administrator]

Low ferritin and/or low zinc linked to hair loss

As GP to do full iron panel test for anaemia and ask for zinc test

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

healthline.com/nutrition/be...

[greygoose in reply to SlowDragon]

Not spinach, SD, humans cannot absorb iron from spinach. That is a myth perpetrated by Popeye the Sailor-man.

[humanbean in reply to SlowDragon]

For info on improving iron through food intake, this website is worth poking around in :

dailyiron.net/

[anniec11 in reply to humanbean]

Thank you very much.

[pennyannie]

Hello Anniec

I don't consider myself stupid for following the doctors advice and neither should you - I am a year or two younger than you, and yes, we are in somewhat unchartered territory regarding our health and grew up believing that the doctor is better informed than us.

I have turned my health round thanks to this amazing site and so can you.

As detailed by others, your results on 125 mcg Levothyroxine were fine - the drop in medication was too much and then the adjustment back up has obviously resulted in your thyroid status wobbly and the resultant drop in T3 and the return of hypothyroid symptoms, most noticeably the brain fog.

The issue is one of the doctor blindly following the guidelines rather than looking at the patient in the round and making an informed decision.

You were fine on 125 mcg Levothyroxine and I would suggest that this level needs to be slowly reinstated to give you back a level of T3 that you found acceptable.

Your vitamins and minerals could be a little better as at optimum levels these can improve your level of conversion of T4 to T3.

It's a slow build back up to where you were, you have done nothing wrong, and your actions are logical showing a level of thyroid knowledge superior to that of your doctor.

[helvella]

Don't blame yourself. There are plenty of medics who appear quite able to blame the patient. You don't have to join in.

How long was left between taking your levothyroxine and having the blood draw back in June 2019?

[anniec11 in reply to helvella]

Bloods were taken just over 24 hrs after taking the last levo the morning before, but not fasting.

[mandyjane]

dont worry about the B12. It is one of those vitamins you cant really over dose on. Mine has been so high at times that it is beyond their measurements. What might be happening though it that you are not benefitting from it and need patches or injections but clearly the main problem is your lack of thyroid hormones and this unnecessary reduction in levo. You can try reasoning with you doctors and show them the information etc provided here but reason seems to have left the medical profession on mass or you can play tricks on them to try and manipulate more levo or you could move toward self treatment or partial self treatment. I am quite a creative person but really struggle with the issue of trying to get doctors to provide me or my child with good thyroid care. My latest thought are that perhaps people should wait until they are being given a good dose of thyroid hormones then develop a nasty needle phobia that prevents further testing. I think probably you need to be retested after not taking your thyroid hormones for 24 hours, first thing in the morning, before food and I did read somewhere that if you set you alarm clock to go off at 5 am, then go back to sleep for a couple of hours it causes a spike in TSH. I think the issue with heart problems has been disproved re a study done of people who have had thyroid cancer who have been on higher doses of thyroid hormone and osteoporosis was always considered a normal part of the aging process it is so very common. This has only changed and become an illness as such since drug companys came up with a pill for it. It makes me cross because doctors are becoming more and more paternalistic and controlling. What should have happened is you GP should have sat down with you and discussed with you whether you wanted to protect your bone health or whether you preferred to maintain the quality of life you had at your current dose of hormones.

[anniec11 in reply to mandyjane]

I couldn't agree more...but I have NEVER been asked how I feel

... GP just staring at the computer and the results listed in my records. (!) There is no way that I could show my GP any documents to read... he wouldn't even consider reading them. Also, re the Bone Scan, I wasn't worried about Osteoporosis it at all, but it seemed an issue to the GP!!! My brain fog just gets worse talking to them...🤯

[penny]

I am of the opinion that it is impossible to tell if one is suffering bone loss due to over medication of thyroid hormones as there is no way of telling if you would have been at the same point with regard to bone density had you not been medicated. The general thinking is that taking too much thyroid hormone (which you do not seem to be doing) will not give you osteoporosis nor damage your heart. IMHO. Dropping you from 125mcg to .75mcg of T4 sounds criminal to me; no wonder you are feeling unwell. Best wishes.

[anniec11 in reply to penny]

I should have known myself not to drop it like that... and had I even known or actually seen the results Gp was acting on, I probably wouldn't have done it. But it was a very stressful time last year so I judt went with what they said. Silly of me.

What also threw me completely was the fact that the NHS Lab returned those results in June as ABNORMAL and I still can't see why?

[pennyannie in reply to anniec11]

The Abnormal bit of the blood test, according to the current guidelines is the fact that your TSH was suppressed at 0.01 and your T4 slightly over range by 1 digit at 20.2 - :

Your T3 in June was 4.8 in a range 2.6- 5.7 so that's 22 points into a range of 31 and that's approximately 70% through the range which is good.

The computer would have flagged the TSH and the T4 and I'm afraid your doctor, rather than look at you and discuss how you felt and looked for symptoms of over medication simply stayed glued to the computer screen ( as they do ) and actioned the computer instructions.

The stress you were under has simply been compounded by this doctor's over reaction and it may take a couple of months to revert the whole process.

Is there an option to see another doctor ?

I'm now self medicating and buying my own thyroid hormone replacement as I live in a rural area and my options very limited.

[anniec11 in reply to pennyannie]

Thank you for your reply. I too live in a rural area..that makes it difficult to find another GP. The GP I used to see at this practice has retired and this lot are more 'business and time-keeping orientated, rather than patient CARE!! I still can't believe that GP has reduced my dose from 125 to 75 because T4 was one point over range????? Have I got that right?? Seems mind boggling to me now. I too would medicate myself, but would have difficulty in sourcing the medication.

[pennyannie in reply to anniec11]

Hey there again,

Well there is your answer, isn't it - your doctor retired and it seems you are now with a surgery that isn't patient focused but time managed and computer led.

Yes, if you look back, I think I saw that your T4 in June was 20.2 in a range of 9-19.

Well yes, I thought that too, but if you start another post asking for Private Messages ( PM's ) people can tell you from where they buy their T4, T3. and or NDT.

I've put myself on NDT as I have Graves disease and am post RAI thyroid ablation.

I did advise my doctor of my self medication and suggested that I would be happy to still come along for the yearly thyroid blood test providing that both T3 and T4 were run alongside the TSH - needless to say I haven't had an answer and that's now going on for well over 2 years .

[anniec11 in reply to pennyannie]

I think the lack of concern and reply to your request is actually a total travesty and a sign of the dire state of our Health Service. All we can do is fight our own way through this shocking state of affairs. I hope you are well at the moment?

[pennyannie in reply to anniec11]

Thank you for your thoughts.

I am well " at the moment " compared to where I was, hypothyroidism is insidious.

My " moments " have stretched into many months and now years.

I 'm still a work in progress, and read it may take me a couple of years on NDT to feel fully well. I'm not sure if I'll ever " bounce back " after all I've gone through with the consequences of RAI.

I'm 72 so, again, guess there has to be some ageing in there somewhere but I'm not complaining, my brain is back and my stamina and energy are following behind slowly.

[humanbean]

Have you ever come across this website?

thyroidpatients.ca/

It has lots of very good articles that are fully referenced on just about everything to do with hypothyroidism.

Regarding low TSH and osteoporosis risk :

thyroidpatients.ca/2018/07/...

thyroidpatients.ca/2019/07/...

Regarding low TSH / T3 and cardiovascular disease there are several articles linked here :

thyroidpatients.ca/category...

[anniec11 in reply to humanbean]

Thank you, humanbean, I certainly have a lot of reading to do. But knowledge is power... they say!! Thanks again.

[SlowDragon Administrator in reply to anniec11]

Same website with tips on how to get highest TSH

thyroidpatients.ca/2020/01/...

One of the reasons we recommend getting blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before

[Catseyes235]

Same story here but this was different doctor who read my results. My old usual doctor asks how I feel ..I say fine and he says carry in then as have no hyper symptoms!! Anyway I reduced from 150 to 100 over a period but started getting hypo symptoms so upped to 125 ...better but not as good as 150 and Medichecks results suggested I would benefit from additional T3 as may be poor converter . Just gathering the strength to go and have that conversation!

[anniec11]

Thanks for telling your very similar story. I hope your GP will listen. I know I would be refused outright if I asked for T3, So I won't even bother and will self-medicate if necessary. I hope you'll be successful.

[Pippers]

Well I'm blowed... neither a gap between levo and blood draw or an early morning blood draw has ever been mentioned in the something like 45 years since I've been diagnosed! Be interesting to see what happens when I leave the gap and make an early appointment for my annual check-up in a few weeks time.

So is thyroxine, sertraline and Omeprazole together at breakfast, followed a couple of hours later by Calcium+D3, a bad idea?

[RedApple in reply to Pippers]

Pippers, the short answer is yes, it's a bad idea. However, for a more comprehensive discussion as to the whys and wherefores, it would be best for you to please start a new post of your own about this, rather than jumping in on someone else's thread

[Pippers in reply to RedApple]

Oops sorry... that's me told! Just surprised to see it mentioned in the reply.