At the end of my tether - please help - Thyroid UK

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At the end of my tether - please help

beanycounts profile image
16 Replies

Hi, newbie alert!

My doctors will not take me seriously. MY TSH hormone level is within the normal range, yet my Thyroxine T4 level is in the low end of the scale and occasionally drops below normal (11.8). I have a raft of symptoms, keep gaining weight and cannot lose it, yet the doctors will not entertain it because it's 'marginally below' normal and my TSH level is fine. I am convinced that my pituitary is not reading the T4 levels correctly as coupled with this, I have been having menopause symptoms (even though I am too young), and I have symptoms (no proven blood tests) of adrenal stress.

No one wants to investigate and I am at the end of my tether, what do you advise?

thanks

M

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beanycounts profile image
beanycounts

Just to add to this, my recent results said:

TSH - 1.71 (0.27-4.2)

T4 - 11.4 (12-22) - outside low end of range

T3 - 4.8 (3.1-6.8)

Globulin and Cholesterol all at the very top or higher than the top range

These were after 6 hours of fasting (not even water allowed) and I have heard that thyroid problems can show up as high cholesterol, high blood pressure (as was at the time) and high globulin levels.

Your T4 is too low and your FT3 could do with being higher, TSH could be a bit lower.

Are these the only blood test results you have or could you obtain a copy of previous ones to build a better picture?

How's your ferritin, vitD, B12 etc ?

beanycounts profile image
beanycounts in reply to

Is ferritin the same as Iron? If so it is 16.9 (6.6-26), there's no vitamin D or B12 on the results, although I have had low vitamin D and calcium in the past (current calcium is 2.4 range = 2.2-2.6, corrected calcium is 2.43 with the same range).

I have had blood tests before over the last 2 years but don't have the results to hand, I will have to ask the surgery. I made a mistake above, my T4 is 11.4, I had a result of 11.8 in 2012, and still the doctors did nothing. They keep saying TSH is OK so they won't look at anything else.

I was at my wits end as I have gained over 3 stones and tried every exercise regime, diet known to man. Now on Allevere which is costing a whopping £200 a WEEK, lost 6lb in the first week, now seems to have ground to a halt/1lb a week if I am lucky. I cannot afford this but I'm getting married next year and do not want to be a chunky bride.

Thanks for help so far.

beanycounts profile image
beanycounts in reply to beanycounts

PS - I meant to also say, the results above were done by the private GP with Allevere to test whether I would be healthy enough for the diet. When my weight loss slowed I asked for him to comment on my results and he ALSO said there was nothing wrong with them, that I have a slow metabolism that's all. He said that my low T4 was only marginal (why have a lower level on the scale if you're just going to say it doesn't mean anything then?). He said 'It has probably raised by now' as she's been on the diet 4 weeks.

in reply to beanycounts

Slow metabolism = thyroid not working efficiently. I'm afraid your comment about being healthy (wealthy surely??) would ring alarm bells. Does this GP have any training in the thyroid?

Here's some info re medical records:

nhs.uk/chq/Pages/1309.aspx?...

Ferritin is stored iron and is important in thyroid function. Do you have antibodies? Cholesterol will be high when hypo and unmedicated/insufficiently medicated.

What is Allevere and why does it cost so much??? It may not be helping you at all!!

Get hold of your records then start a new thread so members can comment.

beanycounts profile image
beanycounts in reply to

Alvere is a diet plan, but high in protein. It's quite often used on people with thyroid issues and diabetics, but I am guessing they already know that they are sufferers when they start it! It's monitored by a GP so your health isn't affected and it's the only thing at all that's worked so far in losing any weight!

Did I not start the thread correctly (I am new to this). It will take me a little while to get hold of my records as I can't remember the exact dates and I know the surgery will grumble about having to look through everything.

Thanks for all the advice so far though :)

in reply to beanycounts

You could always obtain a copy of all of your medical records, maximum charge will be £50. Alternatively you could request to view them which would be cheaper. You're legally entitled to this so don't be fobbed off.

Shall Google this product you're taking!

beanycounts profile image
beanycounts

I am certainly not wealthy, it was a last resort and I couldn't face having bridal photos with me being twice the size (and probably more so).

I don't think he has had any specific training in thyroid and probably is going by the scales only. My boss's other half is a very successful qualified nutritionist with a reputation for blood result interpretation so she's going to have a look over them too.

Clutter profile image
Clutter

Beanycounts, ask your GP to consider secondary hypothyroidism which is caused by pituitary dysfunction and presents with low-normal TSH and low FT4.

cks.nice.org.uk/hypothyroid...

beanycounts profile image
beanycounts

Hi Clutter. Thanks, I actually do think this is what this is. I have already mentioned this in the past, because my women's hormones are all to pot (no history of early menopause, but this is what they are putting it down to), I have no proof of my adrenals which would also support this. However, the GPs just say that pituitary malfunction is very rare and usually due to a tumour. Therefore they are unwilling to investigate as the likelihood of me having a tumour is slim.

My boss's other half is a holistic nutritionist who interprets blood results, so I am planning on getting her commentary, plus perhaps an adrenal hormone test. I have been to see an ENT consultant (for other symptoms), and I have his support in seeing a 'consultant physician' as he calls it. Thanks to a kind soul from here, I've now got a list of good endos, and there's a CP/Endo on there that takes a holistic view and is nearby to me. So, I might see if I can push for this now, when I have a little more evidence.

I honestly think the pituitary is not reading the feedback signals.

greygoose profile image
greygoose in reply to beanycounts

Doctors think secondary hypo is rare because they rarely test for it. If you Don't test, you'll never know how rare or otherwise it is! But that's another thing they Don't learn in med school, so it doesn't exist...

You really, really need your antibodies tested : TPOab and TgAB. Also your ferritin, vit d, vit B12 and folate. Never mind if you had them tested in the past and they were 'ok', you need to know exactly what they are now, this minute.

If all else fails, have you considered self-treating?

Angel_of_the_North profile image
Angel_of_the_North in reply to beanycounts

They say that pituitary malfunction is rare as they don'/won't test for it and ignore anything that looks as though it might point that way. That's not a giraffe; giraffes are really rare - it's a cow with a really long neck ...

beanycounts profile image
beanycounts in reply to Angel_of_the_North

Lol, brilliant

beanycounts profile image
beanycounts

Hi Grey Goose

Thanks for the advice, I have thought about self-treating yes, but would like to go down the doctor route first, see what that brings. I know Blue Horizon do a load of tests for this but the number of them is confusing. Which of their tests would you recommend?

Thanks

Mel

SlowDragon profile image
SlowDragonAdministrator in reply to beanycounts

Blue Horizon - Thyroid plus 10 test (cost approx £90)

will give you TSH, Ft3 Ft4, TT4, TPO and TGAb (antibodies)

Also tests B12, folate, ferratin and CR protein.

Easy to do finger prick test at home (doesn't hurt) - do early in morning, (8am) before eating (can drink water) and if taking any thyroid medication don't take this 24hours before, but delay till straight after test. Pop in the post - get results emailed to you in day or so

Can get Vit D levels checked as seperate test by city assay

See Thyroid Uk for more info and possible discount voucher

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

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