What do do next?!

[Rblondiebelle]

Hi everyone! I am new here and have found some of your posts really helpful but I need some help. I am an American living in the UK and I am having a really hard time with having to tell my own doctor what specialists I need to see and what tests I need and often times have to argue with them while they look through some sort of handbook and I am completely fed up and need some advice.

A bit of background: My mom was diagnosed with hypothyroidism in her early 40's after several years of symptoms. Once they figured out what was going on (cells weren't receiving T3) then she was medicated (ARMOUR) and has been able to keep it under control since. She noticed as she is very very active and healthy but was continuously putting on weight. Now I am starting to notice it in myself - I don't smoke, RARELY have a drink, eat extremely healthy, don't drink soda and eat minimal sugar. When I first moved to the UK 2.5 years ago I was a UK size 6 and about 128lbs. I had been working in Afghanistan so was obviously smaller than my usual size of UK size 8/10 and 135-140lbs so at first I didn't notice the weight gain. It has gradually creeped up and even quicker in the past year and I am now at 162lbs - almost a 35lb weight gain while on a calorie controlled diet and 5+ days a week of excercise. Obviously I am frustrated. I am showing numerous symptoms such as extreme fatigue, tingly hands and feet to the point I am waking up throughout the night, dry gritty feeling eyes, depression and brittle nails. I was so confused as to how suddenly more and more was wrong with me, especially as I am normally very fit and healthy and my mom suggested I have my thyroid looked into. I am miserable at the moment, nothing feels right and I can't change anything no matter how hard I try. I need help and I am finding I am not getting it from the people that are supposed to be providing it (the doctors).

I have been to my GP and my TSH levels have come back normal as predicted but that was the only test they did despite my begging for the full range. I am beginning to realise that many of the tests are not even available so my question to you experts is where do I go from here? This is not normal for me at all - I know my body and I know something is not right. I have private insurance b/c my husband is in the military which covers medical treatment when the NHS will not provide it. I know there are some tests available online as well. So here are my questions,

- Should I book in with a private endocrinologist in Birmingham (closest big city)? Any recommendations of who to skip to avoid the run around?

- Should I order a test from Geneva Europe? If yes, who will draw the blood for a sample? and who do I bring the results to for treatment.

Thanks for your help and patience. I am used to being able to go to whatever doctor/specialist I want and getting any tests done that I ask for without any issue so I am really struggling with how I should proceed.

[PinkNinja]

Hi and welcome.

I'm sorry you are having such a hard time getting treatment. It is extremely frustrating!

Endocrinologists are a bit hit and miss. Many are experts in diabetes rather than thyroid so going private isn't necessarily going to get you better treatment. Of course you can always fire them but that's a lot of wasted money. Thyroid UK has a list of doctors who are reported to be good regarding thyroid disease. If you click on this link and fill in the details, Louise will be able to email you a list of good UK doctors. Hopefully this will narrow your search for one that suits you.

thyroiduk.org.uk/tuk/forms/...

You mentioned tingly hands and feet. This could be due to a vitamin B12 deficiency so it would be a good idea to get this tested. It needs to be above 500. The reference range in the UK is far too low. Vitamin B12 deficiency causes many of the same symptoms as hypothyroidism and often occurs concurrently with hypothyroidism so it is definitely something worth testing. As your doctor has decided that you don't have hypothyroidism (even though it is likely you do with your family history and symptoms) he should have no objection to testing for other possible causes. While you're at it, it would be wise to also test serum iron, ferritin, folate and vitamin D. Deficiencies in any of these could cause your symptoms so your doctor should agree to do them. The only potential problem is that some labs refuse to test vitamin D unless the calcium is out of range.

As for the private tests, I'm not sure how you go about getting the blood drawn but someone else may be able to answer that question.

I hope you manage to get treatment soon.

Carolyn x

[Clutter]

Rblondiebelle, many of the tests can be done by finger prick tests. Blue Horizon or Genova will send home kits for tesing. The phlebotomy dept at your local hospital may do private blood draws for £10-20 if you are supplying the blood vials.

Details of private testing and phlebotomy services are in this link thyroiduk.org.uk/tuk/testin...

I'd be inclined to await the results of private tests which you can post on the forum for interpretation before seeing a private endo.

thyroiduk.org.uk/tuk/diagno...

[SilverAvocado in reply to Clutter]

I've had blood taken for private testing a couple of times. My local phlebotomy will take them for free. I phoned around, and is actually the only one in my area willing to take take any at all. I given a kit that included all the vials and labels, and a postal bag. It was actually easier than other test kits I've I've had, as no freezing, etc. Think the only restriction was that the lab can't receive at the weekend, so do the tests early in the week or your blood will be waiting in a post box somewhere - yuk!

Only issue that can come up, I've found out that there are at least 2 systems of vial technology. It's about how the blood gets passed from needle to vital as it's taken - I didn't pay to much attention as I tend to to get bit wooo-ooo-ooozy! This means not every phlebotomist you meet is familiar with every system. I've been lucky because altho the private tests kits I've had are a different system than the centre I go to, apparently they use that system at at the North end of town, so several people have been swapped to both and know both systems. So basically you might need need to do a bit more negotiating, waiting, and fiddling than if you go in for NHS testing.

[MG1952]

RBlondiebelle, I live near Birmingham and have yet to find an endo. who specialises in thyroid disorders. From personal experience the person I saw (privately as I was unable to get an NHS referral because my TSH was "normal") specialised in diabetes and was not interested in hashi's. I have therefore taken the bull by the horns and am about to see someone in London who comes highly recommended. If you would like to post me a private message I can let you have more details.

[SilverAvocado in reply to MG1952]

Agree, I'm in Liverpool which is a major city, and ended up going going to London. Louise's list of good doctors is unsurprisingly quite short

[silverfox7]

Were you given your TSH result or just told it was normal? Normal is a word we tend to hate as our ranges are different to many parts of the world. So always ask for a printout and post them on here with the ranges as these can differ from lab to lab. as you say TSH on its own doesn't say much anyway. So I'm sure you would benefit from private testing given your family history.