Any advice welcomed

[TEGS]

Hi everyone

You're all so clued up on this stuff, and I have a very long wait until I see an endo again courtesy of some 'normal' bloods so I thought I'd ask you your advice and whether you'd recommend I see someone privately.

Firstly symptoms:

I went to the doctor because of severe left hand side pain. On top of that, serious fatigue and also muscle fatigue. Feeling like I can't hold my weight going up stairs. Pressure in my head like someone has inflated a balloon in it, very puffy ankles, hands and face, hair loss and lack of condition (my hair literally looks like its been fried by a heat lamp) rapid weight gain and then it corrects itself a bit, then gain again, crazily heavy periods and scariest of all (because I sing for a living), times where my voice goes hoarse.

I've had a load of blood tests done, but the reason I'm here is this one:

26-03-15

Serum Free T4 32.9 pmol/L (9.0-23.0)

Serum TSH level <0.01 mu/L (0.20 - 4.50)

Serum Total T3 2.2 nmol/L (1.1 - 2.6)

Thyroid Peroxidase Antibody <10 kiu/L (0 - 35)

Which flagged up hyperthyroidism obviously.

Next tests done after seeing the endo for the first time:

18-05-15

FT4 11.1 pmol/L 9.0 - 23.0

TSH 1.97 mu/L 0.20 - 4.50

Started to feel really unwell and had more done by GP:

Serum free T4 11.7 pmol/L 9.00 - 23.00

Serum TSH 2.52 mu/L 0.20 - 4.50mu/L

They lost the T3 and TPOa (:-/)

GP basically told me to go away, I was fine.

I got some private bloods done including ferritin and vits:

CRP 0.30 <3.0

Ferritin 14.7 20 - 150

Free T4 12.63 12-22

Free T3 4.76 3.1-6.8

TSH 3.39 0.27-4.20

Total T4 143.4 64.5-142.0

Anti-Thyroidperoxidase abs 5.0 <34

Anti-Thyroglobulin Abs 217.7 <115

Vit B12 163 142-725

Serum Folate 16.68 10.4-42.4

Which is interesting. So Ferritin is low, TGO is high and TT4 is high.

Finally, had a thyroid ultrasound which shows nodules on the left side but I can't access paperwork for that.

I'm sure if I correct the ferritin (which is pretty easy to do) some of the symptoms will get better.. but what does everyone think about the thyroid issues? Should I try to see a private Endo? Given how reluctant the NHS seems to be to look into Hashi's. Or do they seem normal?

I'm not really sure what to do next. I have an NHS endo appointment in a few months but will they take the private bloods into account? What do they do for nodules? (also have a big family history of cancer - lymphoma particularly - so would like to make sure thats clear)

My GP is less than useless. He made me feel like I was just whining.

Any advice is massively welcome.

Thank you all so much.

[cal1971]

Can you change your doctor? I recently, after seeing every doctor bar one in my surgery and getting nowhere for two years, wrote a begging letter asking for help to the one remaining doctor, who has turned out to be great. Just a thought before you go down the private route ( I can't afford this so just pleaded!). Best of luck.

[TEGS in reply to cal1971]

Thanks so much for your reply.

I've seen the two seniors at my GP surgery.. they just don't know anything about thyroid issues, particularly ones that are up and down like mine seems to be. I could try a junior doc, but they will only refer back tot he seniors anyway.

Its so crazy.. I can't afford private either, but my mum has agreed to pay for a one-off consult and then be referred back into the NHS with his/her recommendations if necessary.

At least that might give me a bit of grip with the GP's.. I can't go on the way I am right now. Its completely ruining my quality of life (I have two young boys I need to be able to run around after!)

Hope you're well. Glad you've got a good GP. Wish there were more of them!

[greygoose]

Some very weird results. But, first of all, let's disregard the TT results, because they Don't tell us anything useful, and I Don't know why they're still doing them! What interests us are the Frees - FT4 and FT3 - and both your frees are too low. Your TSH is too high. I know it's 'in range', but the range is too high. In most countries the cut-off is at 3.00, so you would be considered hypo. I think you're hypo.

And, if you aren't hypo now, you will be one day because that high TgAB says that you have Hashi's.

You do need to correct that iron, of course, but that isn't going to stop you being hypo. And, you also need to see to that B12. It is so low that you should consider getting tested for Pernicious Anemia. Yes, I know it's 'in range', but - once again - the range is stupid. In Japan, the range starts at 500. anything below that can cause serious neurological damage, which is not reversable. And that low B12 will also be causing you a lot of symptoms. Optimal is 1000. So, best to get tested for PA. In any case, yu absolutely need to bring that level up, but Don't take anything before getting the PA test because that will skew the results. Folate is OK. But you also need to get your vit D tested.

GPs usually are useless, when it comes to thyroid, they just Don't do it in med school - and what they Don't do, doesn't exist! Seeing a private endo might be your best bet. He will probably do a scan of your thyroid and any nodules that are suspicious will have an FNA done on them. But Don't worry too much about nodules. Everybody has some, and they are rarely problematic.

As things stand at the moment, there is no cure - or even treatment - for Hashi's, just replacment of the hormones you can no-longer make. However, you could try something for yourself by going gluten and/or dairy free, and see if that helps lower your antibodies. It might help to get your TSH suppressed, too.

Forgot to say, the results are up and down because of the Hashi's antibodies.

[TEGS in reply to greygoose]

That's really helpful. Thanks so much.

I honestly think they get you to a point where you think you're just imagining your symptoms. I do wonder sometimes if it has something to do with Hypo patients getting free prescriptions.

Will definitely look into pernicious Anaemia.

Do they prescribe hormones for Hashi's? I think I'll have a job getting anyone NHS to treat for Hashimoto given results are 'in range' albeit at the low end.

Does anyone have a list of supportive private Endos that might treat subclinical Hashimotos?

This site is so brilliant. To get some well reasoned sense out of people in the same boat. Definitely makes me feel less alone with it all.

Thank you.

[greygoose in reply to TEGS]

If you have high antibodies and symptoms, they are supposed to treat you. Your doctor is being negligent if he doesn't. Can you see a different doctor?

I Don't think their attitude is due to free prescriptions. In France we Don't get free prescriptions - as I was told once, you aren't as sick as you think you are and Don't warrant special priviledges! - but the ignorance and indifference are the same.

No, the root of the problem is Big Pharma. They are making a fortune out of drugs to 'treat' our symptoms. And they control what doctors learn both in med school and from drug reps. And BP doesn't want us to get well! They would lose a lot of money.

So, Flower has told you about the list of endos. I hope you find a good one!

[Clutter in reply to TEGS]

Tegs, It's not uncommon for thyroid to become hyperthyroid shortly before becoming hypothyroid. It may also have been due to a Hashi attack. When thyroid cells are killed off they dump hormone into the blood stream.

Doctors don't treat Hashimoto's, they treat the resulting hypothyroidism when TSH is over range or FT4 &/or FT3 are below range. Adopting 100% gluten-free diet may help to reduce Hashi flare ups and reduce antibodies. Supplementing 200mcg Selenium or eating 3-5 Brazil nuts daily helps support thyroid function.

If the nodules were suspicious for malignancy or >2cm in size you would have been referred for fine needle aspiration biopsy. Nodules are only removed if they are thought to be malignant or they are impacting on nearby organs.

Ask your GP to test intrinsic factor and parietal cell antibodies to rule out pernicious anaemia before supplementing B12.

Take 500mg-1,000mg vitamin C with each iron tablet to aid absorption and minimise constipation.

Email [e-mail] for a list of member recommended endos. There's no guarantee that a recommendation from a private endo means your GP will treat hypothyroidism if NHS levels are within range.

[Hidden]

Hello Tegs,

Poor you having both hyper and hypo as both can make you feel extremely unwell and symptoms can be far reaching. You are absolutely not whining, you are just trying to understand and get better.

Your high TGAb indicates Hashimotos auto immune disease and your hyper and hypo symptoms can caused by antibodies attacking the thyroid gland causing it to release extra hormone into the blood stream.

Equally your nodules could be the cause by growing large enough to release thyroid hormone themselves. Most nodules are benign but your endo might want to have yours checked by FNA biopsy which I'm told is painless.

You could pay to see a private endo to expediate your consultation and possible FNA biopsy but as your latest results are "in range'" I'm not sure you would get prescribed thyroid hormone replacement medication any quicker.

Also if you took this route you may be expected to pay for any tests conducted by the private endo if your GP isn't very cooperative.

Whilst waiting for your national health appointment you could do another private thyroid function test as the more ammunition you have, the better.

If this were me I would start supplementing ferritin, iron, and B12 asap, and get my Vit D levels checked. I would also supplement a large dose of Vit C to help support the adrenal glands.

When I was diagnosed with Hashimotos 4 years ago my voice was hoarse but got better once medicated on thyroid hormone replacement.

If you email [e-mail], she can provide a list of endos and doctors who members have had a previous positive consultation with.

I hope you feel better soon,

Flower007