Hello I've been hypothyroid for 15 years on 50 ... - Thyroid UK

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Hello I've been hypothyroid for 15 years on 50 mg of thyroxine aday but I feel so ill I've managed to get my blood test results .. Help

Cezza profile image
21 Replies

1HBA1C is 42 range 17 -40

Thyroid per oxidase antibody is 793 Im / ml

White cell count 5.2 g/l 4.00-11.00

Platelet count 252 range 150-400

Red blood cell with 16.6 range 11-14.50

Red blood cell count 4.78 range 380 -5.80

Haematocrit 0.405 range is 0.35 -0.45

Serum TSH 14.01 range 0.35-5.00

Serum free T4 8.9 range 7.00-20.00

Plasa glucose level 3.8 range 4.0-6.0

Mean platelet volume 10.4 range 6.50-20

Neutrophil count 2.7 range 2.00 - 7.50

Lymphocyte count 1.9 range 1.50 -4.00

Monocyte count 0.5 range 0.20 -0.80

Eosinophil count 0.1 range 0.0-0.4

Vit b12 282 range 130-800

Serum folate 11.1 range 4-20

Serum ferritin 9 range 12-250

Serum reactive protein 1 range 7

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Cezza
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21 Replies
Loobs39 profile image
Loobs39

There are loads of people who are better at this than me on here but it appears that you are far too low in Ferritin and also in Folate and although in range your B12 needs to be much higher. That's just for starters - not too sure about TSH and T4 levels so will let someone else comment. Hope you feel better soon at least.

Cezza profile image
Cezza in reply to Loobs39

Thank u loobs39 I'm on iron tablets but levels not changing ?

Loobs39 profile image
Loobs39 in reply to Cezza

I have B12 injections every 2 months and also take Spartone (2 sachets each day) for ferritin but nothing for my folate as it is currently too high. This is a marvelous place to get help and others will undoubtedly give far better advice than I can but no doubt they will suggest you also get your Vitamin D level checked. From what I have learnt on here, your TSH is too high and T4 too low but just wait, someone far better than me will be along in a minute x

Cezza profile image
Cezza in reply to Loobs39

I was referred to an nhs endo but when I went he said he can do nothing for me & yes discharged me last July & also my gp quit so haven't got a replacement yet I am stuck with what to do next

Ansteynomad profile image
Ansteynomad

What you need to do next is find a doctor who will treat a TSH that is way out of range, leading to very low levels of FT4. You must feel absolutely ghastly. On top of that you are positive for antibodies, so you have Hashimoto's Disease.

Like many people with thyroid problems, you are so low in ferritin that you probably need an iron infusion and you also need to beef up your B12, which is very low in range. Ferritin really needs to be above 70 and B12 above 500. You also need to get your vitamin D checked. I would put money on that being low in range as well. It comes with the territory. What GPs often don't realise is that unless those three, plus folate (yours isn't too bad) need to be pretty much optimal before levothyroxine will work. If you are taking iron supplements and your levels aren't changing, this is indicative of an underlying absorption issue, so someone with any basic knowledge of this stuff would be checking you for coeliac disease as well.

Time to find a new GP by the sound of it. Good luck.

Cezza profile image
Cezza in reply to Ansteynomad

Thank u ansteynomad doctor just said my thyroid is defo under active cause I've got antibodies ! I will have to look into changing the doctor surgery or maybe somebody on here knows a good doctor in Cosham Portsmouth. I am very grateful for your comments & will look into coeliac disease thanks again

galathea profile image
galathea

Oh my goodness, you poor thing.... No exaggeration when you say you have been hypothyroid for 15 years..... If you are on sufficient meds, you would expect your tsh to be under 1 or thereabouts...... Certainly your free t4 should be at the top of or just over range.. The b12 needs to be at 600 or over and ferritin at least in the 70's.

What has your doctor been saying about the way you must be feeling? Time to demand a referral to an endocrinologist , but also time for you to let the doctor know he is working for you. First thing you need to do is try a dose increase of levothyroxine to see if you an get the free t4 up and the tsh down. But you also need iron to raise the ferritin. ( take as far away from thyrod meds as you can). And b12, Sublingual tablets are best they dissolve unde your tongue...

Well done for having the energy to at least find yourself a forum..... Your 'treatment ' so far appears to have been almost negligent...

Xx. G

galathea profile image
galathea in reply to galathea

Have just managed to read all the replies, afraid I did my first reply without seeing the because this site doesn't like my iPad..... Ok... If the first endo was useless there is supposed to be a good one at salisburyI. I don't know his name, but If anyone else has see him perhaps they will message you.......

You obviously need to find a doctor, but in the meantime, do you have enough meds in stock to risk an increase? Say to a 100 per day, or may be 100 one day, 50 the next? You can do something about the iron and b12 without even seeing a doc......

G x

Cezza profile image
Cezza in reply to galathea

If I increase my thyroxine everything gets worse I.e fast heartbeat ,restless ,anxiety , lose weight I'm 8 stone now but that drops to 6 stone 12 lbs . My stand in doctor is refusing to refer me to an endo he just told me to take more antidepressants :-( . My main concern at the moment is I'm constantly weeing day & night & really hungry , dry throat , thirsty ,blurred vison , really aching legs & exhaustion & feel like I'm dehydrated . I take my thyroid meds about 6.30 am & my iron at night . My doctor quit in July 2013 !!! Still waiting for a new one

humanbean profile image
humanbean in reply to Cezza

How much iron are you taking per day? And what type is it?

Cezza profile image
Cezza in reply to humanbean

My iron tablets are ferrous fumarate 210mg 2aday

humanbean profile image
humanbean in reply to Cezza

To help absorption of your iron pills, take each one with 1000mg Vitamin C. Be aware that Vit C in high doses may give some people the runs, so you might want to start with just one a day to see how you react, but go up to 2 (Vit C) a day as soon as you can.

I was prescribed ferrous fumarate 210mg as well, but I was prescribed three per day. So, if you wanted to increase your dose it would be fine. I spread them out over the day, but I'm sure you are aware you have to take thyroid medications well away from iron, which makes life difficult.

Incidentally, my doctor thought I was perfectly well with a ferritin level of 21 so only gave me one prescription for iron under pressure, so I bought my own iron pills after that. They are £4.14 per packet of 84 pills from Lloyds the chemist.

Clutter profile image
Clutter in reply to Cezza

Is there no other GP you can see at your practice? Your stand in GP's lack of action is seriously compromising your health. I suggest you write to him requesting an urgent referral to an endo to treat your overt hypothyroidism as your high TSH and low FT4 have long term heart, stroke and bone implications but you can't tolerate an increase in Levothyroxine because of the side effects you mention. Request the letter be added to your medical record.

Excessive urination & thirst are indications of diabetes &/or kidney disease and should be investigated too.

Cezza profile image
Cezza in reply to Clutter

We are not allowed to see any other doctor in the practice ! Doc I've been seeing refuses to refer me to hospital . Side affects from my thyroxine can't possibly be from the tablet as it's synthetic a natural thyroid med that's what doc said . Thank you

Clutter profile image
Clutter in reply to Cezza

That's why I suggested a formal request in writing as his treatment is not resolving your symptoms. You should ask in the letter WHY will he not refer you when you're so ill. You're entitled to ask for a 2nd opinion. If you cant see another GP in your practice, can you move to another surgery?

It is unlikely that you're intolerant to thyroxine which is a natural hormone, but you could be intolerant to one or more of the fillers.

sirmot profile image
sirmot in reply to Cezza

It might be that the reason you can't tolerate higher doses is because you have underlying adrenal fatigue, which needs to be corrected. Once that is dealt with, you are likely to start to tolerate higher doses of thyroid medication. The weight loss on higher doses is confusing though.... I agree totally with all the other posts - you must be referred to specialist without delay. Good luck!

Cezza profile image
Cezza in reply to sirmot

Doctors reply to my asking him if I had adrenal fatigue .... Cfs .

sirmot profile image
sirmot in reply to Cezza

sorry, couldn't see his reply, did you post it?

sirmot profile image
sirmot in reply to Cezza

My doc (private) regularly checks various cortisone levels via a urine test (I can send you more details if you wish) and I know that when they were very low, I was unable to tolerate an increase in my thyroid medications. Now they are corrected with supplements and I can tolerate much higher doses of thyroid meds (T4 and T3) than before and feel much better. What does Cfs stand for??

Cezza profile image
Cezza in reply to sirmot

Chronic fatigue syndrome

Cezza profile image
Cezza

Thanks everyone for all your advice I'm very grateful x

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