Thyroid UK
84,089 members99,064 posts

Help Need Advice

Hi all, I have not posted on here before but have been lurking for a few months, I am in the US, (not the UK, sorry) And I have recently been going to all the docs to get diagnosed with stuff, I already have Fibro (diagnosed 10+ years ago) PCOS, mild Sleep Apnea, Restless Legs, Migraines, Cluster Headaches and with all the list of current symptoms I meet at least of the 11 diagnose requirements for Lupus but am still waiting for the appointment with Rheumy, I did get to an endo and he said I also have Hashimotos, and am also currently waiting for appointment with Nephrologist as there is kidney involvement I don't do well with meds, some have no effect, and some have over effects, my list of symptoms are pages long. but of the Lupus 11 I have; Malar rash, Photosensitivity, lesions in my nose, Renal disorder, the endo took bloods but I don't have the numbers he also took the ana and adna bloods but again don't have the results yet. I just had to vent today I guess, I feel awful like I am trying to run through water today, everything takes effort and it hurts all the time.

15 Replies
oldestnewest

I'm not surprised everything takes effort. I think you are very brave.

Are you on Levothyroxine? Did you have Vitamins D and B12 Folate and Ferritin tested also?

1 like
Reply

No I don't think he tested vitamins and I am only on pantaprozole for Gerd and Cymbalta for Fibro/depression. That's all I take and since the Kidney involvement I can only take acetaminophen for pain as nsaids are not recommended with Kidney issues.

1 like
Reply

So not yet been prescribed treatment for Hypothyroidism?

Endo should have done that and followed up after 6 weeks with blood tests and dose review.

Reply

No he is seeing me in three months but hasn't prescribed anything.

1 like
Reply

It would be interesting to see your blood results when you can get hold of them.

X

Reply

I called and asked they said they are sending them in the mail. I guess I will have to wait and see.

1 like
Reply

Hi Aralyn.

You need to get off the Cymbalta if you can. I was put on that a few years ago for neuropathic pain and I became almost comatose after a few weeks. It blocks thyroid function. I didn't find out till later that it was the cymbalta - it does tell you this can happen on the online advice leaflet. My TSH went up from 0.43 to 6.9 whilst taking it and I was on 125mcg of thyroxine at the time. When the blood test came back the lab and the GP were querying whether I was taking my thyroid meds because they didn't know about the action of cymbalta. The withdrawal symptoms were horrendous when I came off it. Look those up online!

A couple of years ago my daughter was put on it for depression and she ignored my warnings but she's come off it now and says she wishes she'd listened to me at the time.

2 likes
Reply

Welcome to our forum Aralyn,

You don't need to be in the UK to join our forum and I'm sure members will be helpful as they usually are.

We are not medically qualified but through our own experiences we have learned quite a lot.

One of our Advisers was American but unfortunately for many he died due to an accident but some of his work is archived. He was also a scientist as well as a logistician. He ran Thyroidscience, Fibromyalgia Research Foundation and Dr.Lowe.com so it has been a big loss in general to all of the suffering. Much of it could be prevented if only other doctors were inclined. They are apt to prescribe for each symptom instead of treating us with a decent thyroid hormone, not necessarly levothyroxine. He stated that those with Fibromyalgia were Thyroid Hormone Resistant so could only improve on T3 (liothyronine) alone and at higher doses.

web.archive.org/web/2010103...

web.archive.org/web/2010081...

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010112...

web.archive.org/web/2010112...

thyroiduk.org.uk/tuk/about_...

These are a few to start with. Some links within may not work as site is archived.

When you have blood tests they should be at the very earliest, fasting, and allow about 24 hours gap between last dose of thyroid hormones and test and take afterwards.

Ask for a Full Thyroid Function Test i.e. TSH, T4, T3, Free T4, Free T3. B12, Vit D, iron, ferritin and folate.

As you have thyroid antibodies you have an Autoimmune Thyroid Disease called Hashimoto's - the commonest form of hypothyroidism and treatment is the same.

Get a print-out of the results and ranges and post for comments..

1 like
Reply

It is a real pity doctors haven't a clue about hypothyroidism and below is an excerpt I copied a few years ago and don't have a link and it is self-explanatory:-

Multiple Ovarian Cysts as

a Major Symptom of Hypothyroidism

The case I describe below is of importance to women with polycystic ovaries. If

they have evidence, such as a high TSH, that conventional clinicians accept as evidence

of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's

tissue thyroid status. Because of this, she may fair best by adopting self-directed

care. At any rate, for women with ovarian cysts, this case is one of extreme importance.

In 2008, doctors at the gynecology department in Gunma, Japan reported the case

of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the

gynecology department because she had abdominal pain and her abdomen was distended

up to the level of her navel.

At the gynecology clinic she underwent an abdominal ultrasound and CT scan. These

imaging procedures showed multiple cysts on both her right and her left ovary.

The woman's cholesterol level and liver function were increased. She also had a

high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.

Blood testing also showed that the woman had primary hypothyroidism from autoimmune

thyroiditis.

It is noteworthy that the young woman's ovarian cysts completely disappeared soon

after she began thyroid hormone therapy. Other researchers have reported girls with

primary hypothyroidism whose main health problems were ovarian cysts or precocious

puberty. But this appears to be the first case in which a young adult female had

ovarian cysts that resulted from autoimmune-induced hypothyroidism.

The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an

ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism

be properly managed, as the simple replacement of a thyroid hormone could resolve

the ovarian cysts."[1]

Reference:

1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as

multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,

24(10):586-589, 2008.

2 likes
Reply

Thank you, I had no idea!! I have had PCOS for Years and my thyroid has been swollen but numbers were acceptable a loooooong time ago, I have just been getting ultra sounds yearly on my thyroid since then. All I had known was that I had Granular cysts in my thyroid that grew and shrunk by themselves. I had no idea it was related to the PCOS or I guess I should say that the PCOS was related to thyroid hormones.

1 like
Reply

The lack of thyroid hormones affect our whole body and that's why symptoms are so varied.

Our brains need the most T3 followed by the heart (so I believe) and when people are prescribed anti-d's for 'depression' I doubt the FT4 and FT3's were ever checked. We need both FT4 and FT3 to be towards the top part of the range. T4 is inactive. It's job is to convert to T3 but sometimes it doesn't do so efficiently and research has shown that it is beneficial for us to have T4 plus T3 prescribed. but Endocrinologists appear not to read research but follow the 'guidelines' which don't always guide us to good health as we are restricted most times to one type of hormone replacement in the UK.

1 like
Reply

Both Hashimoto's and PCOS are linked to gluten intolerance and therefore to leaky gut - so likely to have low vitamin levels, very important to check vitamin D , folate, B12 & ferritin

Come back here with a new post once you have results

Suggest you try 6 months gluten free to see if you get benefits

pcosdiva.com/2017/03/pcos-a...

Reply

Getting your nutrient levels up to optimal is vital for anyone with hypothyroidism because low levels of nutrients are extremely common in sufferers and symptoms are made worse by them too.

Just a couple of examples - fibromyalgia has disappeared or been reduced in severity by optimising nutrients, and restless legs is often caused by low iron and ferritin.

If you could get an iron panel, haemoglobin, vitamin B12, folate and vitamin D tested, get a hold of the results including reference ranges, then copy the results and ranges into a new post we could suggest what you need to supplement.

If you have a disobliging doctor who won't do an iron panel, then try and get at least iron and ferritin, or just ferritin If that is all you can get in relation to iron.

If you have a very obliging doctor then you might want to ask for zinc, copper, selenium, and vitamin A to be done as well. But the chances of success are probably very slim indeed. (And I don't know how much money you have to pay our for tests in the US so I realise it might not be possible.)

This page has some links to companies that do tests without involving a doctor in the USA - it might be useful if your doctor is not helpful and you can afford it :

stopthethyroidmadness.com/r...

1 like
Reply

And being in the US you have a much better chance of finding a really good functional doctor who has a much better understanding of holistic care and could help with these numerous issues more effectively. Try the Institute for Functional Medicine (www.ifm.org) to find a practitioner closer home.

2 likes
Reply

I got my results and posted them as a new post. Don't understand them, dr just says all of them were fine. But I still feel awful

1 like
Reply

You may also like...