Thyroid issues? Doctor thinks its all in my head

[Piffyonarockbun]

Just had an horrendous doctors appointment. For years i have been complaining of constant tiredness. I get a blood test, they say its normal and send me away. I stay quiet for a bit until it gets worse and go back. Rinse and repeat. I now have constant exhaustion, thinning hair and eyebrows, dry skin, im constantly cold and 4 weeks ago my voice changed. It is constantly hoarse. Most of the time i can hardly speak.
Went to doctors today. My tsh is 2.62. He told me 5.33 is when something is wrong and why am i not happy cos all the blood tests show im perfectly healthy.

I had ptsd a few years ago. It was treated privately and now im fine but he seems to think its down to that. I got upset about being fobbed off again. I told him something was wrong. He said its not my thyroid. All vitamin levels are sound as well according to him. He cant explain the other symptoms. He gave me an acid reflux medicine for my throat making a big show that he was giving me something (clearly because all my addled little mind wants is a prescription). He did say if i come back in 4 weeks he will refer me to a specialist but didnt say what kind!!

Im at home in tears. Can anyone advise me. It maybe isnt my thyroid but i need to know what it is. The doctor repeatedly said its not a physical issue and said it was self induced. how do i induce my eyebrows to fall out or my voice to go hoarse??

There are no kind compassionate doctors at my surgery. I think its all been beaten out of them by government cuts but i cant go on like this. Should i go private? Who to? How?

That sounds like a real struggle Piffyonarockbun :( you could see a private endocrinologist who would be able to run more extensive thyroid tests (not just your TSH, your GP could also do these but rarely do) they'd let you know during a consultation if they thought that was appropriate or may suggest testing for other things if they suspected something else. Have you had a full blood count and other hormones tested or just thyroid?

Did he just do tsh? And fbc?

The TSH is a really blunt instrument that won't identify all thyroid issues. There is increasing evidence that thyroid issues go undiagnosed becuase of the over-reliance on TSH and doctors failing to listen to and understand patients' symptoms: bmcendocrdisord.biomedcentral.com/articles/10.1186/s12902-019-0365-4

There are some really good websites where you will get good information about thyroid conditions:

www.thyroiduk.org
www.tpauk.com

You may well have an autoimmune condition called Hashimoto's Disease, which is a bit like Type 1 diabetes but effects the thyroid gland, rather than the pancreas. To find out if you have this, you need to get your thyroid antibodies tested.

Also, you need to get vitamin and mineral levels checked - B12, folate, ferritin and Vit D at the very least. When the results come back ask for print outs of the tests and make sure that you are at least half way in all the ranges. Just scraping inside a range or even being below it, is not a good level and probably means that your body is not functioning as well as it could do, if you have optimal levels.

In your situation, I would go back and ask to see another GP at your practice and say that you do not feel that the GP you saw was working with you to find the cause of your health issues and you would like further thyroid tests run. Take a copy of the paper, I linked to, if you feel it would be helpful. Ask for a re-run of TSH and also request Thyroid Antibodies, FT4 and FT3 (they probably won't do FT3 but ask anyway) and also the vitamin and mineral tests I listed above.

Sadly, women are easily brushed off as being "tired", "hormonal" or "depressed" because for some strange reason thyroid conditions are deeply medically unpopular at the moment, so you will have to fight your corner and get educated.

Thank you all for your help. He only mentioned tsh, nothing else and just said b12 and vit d was fine. He was very angry with me. Not sure why. I was just insistent that i wasnt ok and it wasnt in my head. Ill ask for a printout of the results. Ive looked on some thyroid sites and its all a bit overwhelming. I cannot tolerate gluten at all and have been gluten free for years. My voice has been the final straw. I can barely speak at the moment. He did say he would refer me to a specialist in a few weeks but didnt say what kind. Im just so tired of being so tired!!

Piffy it is over-whelming at first, particularly because you have to face the awful realisation that your GP is not going to help in the way you always thought they should.

Go back to the thyroid websites and slowly, in small amounts when you can manage it, start arming yourself with information. The TPAUK website has a free forum, so you can ask questions on there. Nearly everyone on there has found themselves in your situation at some point.

Piffy, I struggled to get a diagnosis as my TSH was 5 which is apparently normal. I was pregnant though and had miscarried twice (possibly due to this), I wasn't prepared to do nothing and have it happen again so armed with info from people on here and the thyroid website I went back and stood my ground. Its difficult, the info my gp gave me was just totally incorrect.
Keep an open mind though as you don't know that this is a thyroid issue. I'd ask your receptionist for a print out of your results, see exactly what has been tested so far and then if not already done as for the tests Margo has listed. Also see how 'normal' your B12 etc is - is it bang in the middle or barely within the normal range.

I really feel for you, it's not nice to feel unheard. I'm experiencing similar symptoms to you though not the hair thinning and have also been told my thyroid is normal, though I know something is amiss. I'll have a look at the recommendations that have been made here.

I've recently researched multi vitamins and started taking one that has really good reviews in the hope that it helps with exhaustion, it's worth a try.

Good luck

I would probably get full thyroid testing done privately.
The online ones are good - you can arrange a nurse to come and take the sample and it’s all about £80.
Hope you get some answers soon.

I was like you op, i eventually paid to see someone privately, who said that a TSH over 2 is a sign that your thyroid is struggling. She suggested the lowest dose of natural dessicated thyroid, but that was too much for me at the time and made he hyper so I stopped. I didn’t know enough then to know that I might have been fine on a low dose of levothyroxine. I went another two years of seeing my GP and only after I got tested in A and E after a fall, was I put on thyroxine, by then my TSH was in the twenties and I could barely get off the sofa, couldn’t walk uphill without palpitations.
I recently had the same problems as I needed a higher dose, but yet again my GP was marking my TSH of 4.9 as normal.
I paid for private bloods to get the complete picture, and then saw a private doctor who upped my dose which made a big difference.
Thyroid care is woeful, if anyone had bothered to check my antibodies in the ten years I spent shuffling back and forth to the GP, then they would have seen Hashimoto's. My mother had it, lots of family members have it, but I still went unmedicated all that time.
There are online companies that will do a full thyroid profile blood test, I think I used Blue Horizon ? It also tested vitamin D and other things that can be low with Hashis but can also cause similar symptoms to an under-active thyroid on their own. I think it cost about a hundred pounds but it was worth it.

Also change your GP.

As others have said, you need more tests than just the TSH - from my experience T3, T4 and TPOab. Your GP can request them (at least in my area).

Can you see a different GP who might be more sympathetic? I went to a private endocrinologist but it cost £275 for the first appointment plus extra for blood tests so not exactly cheap!

I would personally warn against taking high doses of vitamins without speaking to a doctor (a better one than your current GP!) first. I'm sure a general multivitamin is fine but don't do what I did and take multivitamins plus extra iron supplements etc that actually double up on some of the ingredients..

How your periods? Sometimes pcos is confused with thyroid problems.

Thank you all. Ill try a different gp. There is a female gp who might be worth a try. My periods are spot on regular as clockwork but they are so so light. They last less than a day and i could get away with just a panty liner tbh. I did ask about vitamins and he just said my levels were normal so its a waste of time! My next step is to ring the surgery and get a print out of the results and then ive got a wish list of ones i would like doing if they are not on the list. I feel a lot better now. Just getting the support here has been invaluable. I told my husband exactly how i would be treated before we went in and i dont think he believed me. He was so shocked to see me completely ignored and dismissed. He had his appendix out last year due to abdo pain and was shocked when the doctor freely admitted that if it had been me i would probably have been left in pain to make sure rather than whip it out quick like they did for him.

That's horrendous about the appendix thing. Might be worth getting your periods looked at may be completely normal for you but it ties in with being teird alot. Also look into POTS see if anything matches.

It sounds silly, but tbh I'd consider bring your husband with you to the next appointment. Sometimes it's helpful to have someone else listening/taking notes/remembering the right questions to ask etc.

Hi, just following as in a similar boat. I got tests done by Thriva 3 months ago which showed TSH of 3.5 and T4 12.4. I also had low vit D and omega, fats so been supplementing those and due to retest. Thriva do a reasonable cost full thyroid profile which I'll do this time as I know GP won't want to treat with 'high normal' TSH. It was £70 as part of their introductory offer to do full blood count, liver enzymes, various vitamins, diabetes tests, cholesterol, T4/TSH and fatty acids, and you can personalise tbe tests you want or they'll recommend based on symptoms.

I've just changed my GP due to being fobbed off. After many months, I have just seen a hospital doctor who told my my problem was probably x. When I asked my GP a few months ago if it could be x, he ridiculed me. I've had numerous other unhelpful/rude comments from the GP.

I have just changed to a new GP and the difference is like night and day.

Look at the reviews for your surgery on the NHS website or just google. On both websites , my old Surgery is rated as 1/5 stars, so I know it wasn't just me. My new surgery has 4/5.

OP, did your gp not physically check your thyroid for any noticeable, large nodules? Your hoarse voice should have been a red flag for him..

OP, this was me threecyesrs ago. Exhaustion fell on me and then had a multitude of symptoms creeping and I was convinced something was wrong with me, so there started the trips to the gp and tests that kept coming back normal, and when there was something on one end of normal, was insistent that it meant it was a normal. When my gp mentioned the menopause and anxiety related, I could have strangled him. I still had regular periods, no sweats etc...

Thankfully, my symptoms were bad enough that he went with my requests of further tests, mri, even referral to ENT consultant. It went on for two years until I accepted that indeed, all was due to the perimenopause. Never would I have believed that it would affect as it has. The exhaustion was due to poor quality sleep, induced by anxiety that I wasn't even aware of, because I didn't feel anxious in my head as I recognised it.

You mentioned light periods which made me think of it. Have they always been this light?

In 2004 a girl came up to me in a pub and said im a nurse you need to see a gp your neck is enlarged i think its your thyriod
In 2007 my sex drive disappeared amd has never come back. I started putting on weight quickly my skin was red i had a hoarse voice all the time . Fatigue painful feet all point to hypothyroidism. Last qeek 2019 after 15years of suspected thyriod issues they have aggredd to treat me but my bloods are still board line its been a hellish nightmare just keep fighting

I’m so sorry you are struggling. To be blunt, most GPs (and consultants) know fuck all about thyroid issues and don’t want to know as it’s “women’s histrionics”. It is shocking.

Do you have any spare cash? You to get some private thyroid screening done (T3, T4, reverse T3 etc). My recommendation is a local BANT registered nutritionist who is good at thyroid issues. They can get these tests for you and also the bigger picture as lots can be done for thyroid problems (if it is that!) with food and supplements.

My GP refused to diagnose me on my TSH so I had a private thyroid screen with Blue Horizon which showed antibodies thy indicate Hashimotos disease.

GP then prescribed levothyroxine.
Your symptoms sound classic - look at the Thyroid UK website for advice.

Thyroid problems are massively and systematically under diagnosed by Uk GPs.

Gluten intolerance and thyroid problems go together BTW

At the same time, there is a trend to blame thyroid for everything.

I too had very elevated antibodies about 3 years ago. It was just a routine blood test. My GP said that we would keep an eye on it. Tested again 6 months later, results still elevated but not so much. Tested again 6 months later and they were back to normal with no treatment at all.

My TSH also came back high about 10 years ago as a one off. No treatment received and it's been normal ever since.

If you’re happy to go private I’ve recently been to see an amazing man named Dr Jacobs based in Dorset / London.
Traditional trained Dr specialising in Eastern medicine and using German / Russian bio medicine techniques to identify these issues in our body.
By using a machine he was able to tell me a whole heap of symptoms / viruses etc I have either had in the past (and still carry) and am currently suffering with.
One of my issues was thyroid. Already I’m feeling warmer, more energy, brain feels more alert.....
I know if I went to a regular GP these things wouldn’t get treated.