Advice for talking to doctor: Hi all, I'm new to... - Thyroid UK

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Advice for talking to doctor

Julesboz profile image
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Hi all, I'm new to this and would like a bit of advice before speaking to my doctor on 29th. Here's a history.

I'm a 51 year old active woman. I'm not overweight, I eat very healthily, don't drink and have never smoked.

A few years ago I became ill and after extensive tests (scans, colonoscopy, endoscopy etc), worked out that I was lactose intolerant. At about the same time I became completely intolerant to alcohol, even a half glass makes me feel like I'm going to die. When I mention this to my docs, they just shrug their shoulders.

18 months ago my periods dropped from every 4 weeks to every 3 weeks and I lost my libido completely, along with having complete exhaustion all the time. I also have multiple aches and pains (mainly hips), sore mouth and tongue and really dry eyes. I went back to my doctor who told me it was all in my head. He did bloods, but told me all was ok (I wish I'd checked them!)

I was forced to conclude I must be perimenopausal and found some natural progesterone and oestrogen cream online (I can't tolerate synthetic hormones and the docs are useless with anything else). For a time I picked up after using the cream.

However in the last few months I've become more breathless (assumed asthma) and have developed a low body temp (avg 35.9), I have apathy and exhaustion, more body aches, incredibly painful hands, cramps, libido has disappeared again and my nails skin and hair are terrible!

I went back to see another doctor (a year after the first one) and she said 'sounds like your thyroid'. Anyway, I came back and read about hypothyroidism and thought, that's me! My bloods came back as follows:

Ferritin 8 (range 15-300)

Vitamin b12 330 (range 180-700)

Folate 4.1 (range 4.6-18.7)

Haemoglobin estimation 110 (range 115-165)

TSH 1.32 (range .27-4.2)

She didn't do a full thyroid test so I paid privately for the following:

Total T4 73.6 (range 59-154)

Free T4 12.48 (range 12-22)

Free T3 3.39 (range 3.10-6.8)

It looks like I've got some form of anaemia and very low free t3 and T4.

I'm going to the docs to discuss my results armed with information but am wondering if anyone has any tips that might help. I don't want to be fobbed off with 'it's all in your head' or 'what do you expect for a woman of your age'.

Thanks in advance!

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Julesboz
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10 Replies

Hi although medically you would not be classed as hypo at the moment your results show you are heading this way. I was the same for many years and told all was normal but you can still feel awful. I did and would now with your levels. You have to weigh up if you want to push the doctor to do something which they probably won't right now or you self medicate, or wait until you are medically hypo. Doctors usually wait until your tsh goes up to 10 and ft4 and ft3 go below range. This can take months or years depending on the person. One thing that may help is to work at getting those vitamin levels up as they are very low as that can help the thyroid production. It's highly likely you will be hypo soon though. Personally with you being better on natural meds I would consider self medicating with NDT but that has to be entirely your call and yours alone.

Julesboz profile image
Julesboz in reply to

That's brilliant, thanks for the reply. From what I've read I'm assuming the doctors will be reluctant to do anything apart from treat the anaemia. I had read about NDT but I didn't think you could get it in the U.K.? Especially without prescription? Am I wrong?

in reply to Julesboz

You can buy it from outside the uk and have it sent in for personal use which is totally legal. I self medicate but my levels of ft3 and ft4 went rock bottom below any range. My TSH only went up when my levels were almost non exsistant, they were literally a trace amount in my system. So if it is central hypothyroidism you have it can be extra difficult to get doctors to act. Weigh up all your options and consider carefully but inbox me if you want more info x

Clutter profile image
Clutter

Julesboz,

Low-normal TSH with low FT4 indicates possible central hypothyroidism but I don't think you'll get much joy out of your GP until FT4 is below range.

Ferritin 8 is very low and can indicate iron anaemia. Low haemoglobin also indicates iron anaemia. Your GP should do an iron panel to check.

Folate is deficient. My GP prescribed 5mg folic acid for a couple of months to correct folate deficiency.

B12 is low but is within range. Ask for advice about folate deficiency and low B12 on healthunlocked.com/pasoc

Low haemoglobin can indicate iron anaemia, folate anaemia and B12 anaemia. labtestsonline.org/understa...

Julesboz profile image
Julesboz in reply to Clutter

Thanks for your response, that's useful info. I'll investigate further.

Julesboz profile image
Julesboz in reply to Clutter

Clutter, just to let you know, I've investigated central hypothyroidism and it certainly sounds like I might be headed that way. I had a look at the causes of it and most of them don't apply at all, then I happened to notice that one of the causes is something called Sheehan's Syndrome.

yourhormones.info/endocrine...

It's caused by damage to the pituitary gland during childbirth if there is haemorrhaging. It's rare in the western world because haemorrhaging during childbirth is now rare, but it's estimated that 30% of women who have haemorrhaging will have some sort of damage to the pituitary. It also takes years to show symptoms in most cases, with 13 years being the avg to diagnosis. Also 80% of Sheehan's sufferers present with aenamia.

How strange that nearly 13 years ago I had my 3rd child and had severe haemorrhaging after he was born. Not enough to need a transfusion but enough to have everyone running around panicking and threatening to take me into surgery if it didn't stop. I wonder.... anyway, thanks for the advice. I will be mentioning this to my doctor to see what she thinks.

Julesboz profile image
Julesboz

Hi, sorry, I missed some test results....

Thyroglobulin antibody <10 (range 0-115)

Thyroid peroxidase antibodies 7.01 (range 0-34)

So I guess unlikely to be Hashimoto's?

Ta!

Clutter profile image
Clutter in reply to Julesboz

Julesboz,

Right, they're negative for Hashimoto's.

rsae56 profile image
rsae56

metabolichealing.com/iron-d...

Julesboz profile image
Julesboz

Hi all, I just thought I'd give you an update on my appointment with my doctor today. Fortunately I've been pleasantly surprised and my doctor took me and my test results seriously.

She has prescribed me iron and folic acid tablets to combat the anaemia and is referring me to a gastroenterologist to check out the cause. She's also testing me for celiac disease.

The best news is that she's calling an endocrinologist to discuss my low free t3 & free t4 levels. She took my research on secondary hypothyroidism and Sheehan's syndrome seriously and will discuss it with the endo. She said she'd let me know when she'd spoken to them.

Thanks so much for everyone's help and advice. Going into the doctor armed with information certainly helped me!

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