Do I need Thyroxine: Hi I'm almost 65. I started... - Thyroid UK

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Do I need Thyroxine

Heather561 profile image
7 Replies

Hi

I'm almost 65. I started to have headaches & lethargy about 6 years ago. In July 2015 I had a small benign pituitary tumour removed. The Neurosurgeon didn't believe that was the cause of my headaches & he was right. 12 months ago I went gluten free & high protein which has helped & my excess weight has gone which is lovely. Unfortunately, I still have off days & night sweats, brain fog, intermittent ear pain, & a feeling of wanting to swallow. I recently had blood tests which all came back good except cholesterol which is 7.3, because I thought HRT would help. After 6 days I took the patch off because bad headaches started, very tired & a very low, miserable feeling. Awful. I tried progesterone cream a while ago that did the same thing so it must be the progesterone that disagrees.

My blood results in April 2016 were LH 28.5, FSH 54.0, TSH 3.1, FREE T4 10.6, PROLACTIN 74, CORTISOL 241.

Blood results September 2016 TSH 2.4, FREE T4 10.1, PROLACTIN 137, CORTISOL 227, IGF-1 117.

When I told my GP last year I was still unwell she said she didn't know what was wrong with me, obviously because my bloods come back "normal".

It's a minefield.

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Heather561
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7 Replies
SlowDragon profile image
SlowDragonAdministrator

Can you add the ranges to these results, if you have them

FT4 looks very low

For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

You are unlikely to get full thyroid and vitamin testing from GP, but you could try

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

High Prolactin can be symptom of being hypo

High cholesterol certainly is

Heather561 profile image
Heather561 in reply to SlowDragon

Hi

Thank you for your reply. No, this is all the info I have on a letter to my GP from the hospital.

I'll check out the site you recommended.

Clutter profile image
Clutter

Heather561,

TSH is unreliable when there has been a pituitary adenoma and surgery. TSH 3.1 is in the normal range but may not be responding adequately to low FT4. You really need to know the FT4 range to see where in range it is. Your GP or the hospital should be able to advise what the range is. If not, order a private TSH, FT4 and FT3 test via thyroiduk.org.uk/tuk/testin... Medichecks do #ThyroidThursday discounts.

Usually FT4 will be around halfway through range in someone euthyroid (normal). If FT4 is low in range it is possible you have TSH deficiency post surgery (secondary hypothyroidism). Secondary hypothyroidism is treated with Levothyroxine to replace low T4 but it is managed in endocrinology as investigation should be done to check whether there is also deficiency in sex and growth hormones.

See Secondary hypothyroidism in cks.nice.org.uk/hypothyroid...

Heather561 profile image
Heather561 in reply to Clutter

Thank you.

Looks like secondary hypo to me - but hard to say without ranges. Low free t4 (and free T3, but they haven't done it) and normal to low TSH. Caused by a problem with the pituitary (which you know you had) or the surgery for the problem. Very hard to get NHS to acknowledge it. You'll probably do better on NDT or T4+T3, but the NHS is very unlikely to prescribe either. You need to see an endo about those results mentioning secondary or central hypothyroidism (esp with your history)

Heather561 profile image
Heather561 in reply to Angel_of_the_North

Thank you. I'm realising that this is difficult to get to the bottom of & how many of us are suffering. I'm going back to see my GP in a fortnight regarding the HRT disagreeing with me so I will try to be brave enough to discuss the info that you have provided. I don't see my Endo till March but even he brushes over me when I say I feel off. I don't feel testing here is thorough enough.

Heather561 profile image
Heather561

Hi A of the N

I went to see my Endo mid December & I told him that I knew that I had a thyroid problem & if he didn't prescribe me any meds that I knew that I would become very ill.

He agreed that it could be secondary/central hypo or that I am borderline. So he prescribed 25mcg of levothyroxine. I started on Wockardt but felt nauseous after a few days & my scalp became very spotty plus after walking into town my knees & calf muscles ached terribly. Eventually the aches subsided but not the nausea. I'm now on Eltroxin & the nausea has gone. I definitely feel more with it, no headaches & tiredness gone. Still slightly spotty but hope they will go. I am wondering if I should ask for Armour which has as some T3 in it but to get this far is wonderful. I had to be so bold with the Endo which isn't like me but something made me stand up for myself (the need to get better, I suppose). We do have to do our research re this problem & go prepared when seeing the doctors who treat us all as one which is so wrong. I feel that there should be an overhaul of the whole testing system re hypo. I think it's an underlying cause of many illnesses but overlooked.

Thanks for being there for all of us.

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