To want to trial treatment for hypothyroidism?

[SinkGirl]

My health has been shocking for many years, but especially the last decade. I have pretty much every known symptom of hypothyroidism. In the past I’ve asked my doctors to check it and my levels have been fine (eg TSH 1.3 - 1.7, FT4 always between 12 and 15 so not great but not awful).

Things deteriorated in September last year so I started doing private thyroid blood tests and my levels are all over the shop. In May I did several tests to try and see how variable my levels are - Tsh went from 5.95 to 1.6 and back up to 3.7 in the course of a month. Other levels are similarly all over the shop, especially FT3. TPO antibodies were rising, went to 22.4 but then back down to around 12.

My GP has agreed to run another load of tests in a few weeks. I’ve got another private blood test to do a week or so before so that at least if there’s a lot of variability I can show that.

I am utterly desperate to trial treatment - that’s all I want, to try it, and if my levels go out of range or it doesn’t help I can stop.

I can barely look after my children, my marriage is on the brink of collapse since I have zero sex drive and can’t even stand to be touched. My brain doesn’t work properly, I’m in constant pain.

If I don’t get any joy with the GP I need to find a specialist I guess, although I can’t really afford to do that, and no guarantees they’ll help either.

Everything I’ve read says that this level variation isn’t normal, and after having years of tests showing my Tsh level mid 1s, surely seeing it jumping up like this shows it’s not normal for me either.

If anyone has any advice I’d really appreciate it.

I have Hashimoto’s, am on medication, and I fluctuate. Maybe not so dramatically as from month to month, but hyper to hypo swings are normal. Have they tested you for TPO antibodies? Are you on thyroid medication?

I have absolutely been there, feeling as if my life is on the brink, so I really feel for you. If there’s any chance you can see a functional medicine doctor and pay privately, I would recommend that as an option.

Also, this book by Dr Wentz was invaluable to me: www.amazon.com/Hashimotos-Protocol-Reversing-Thyroid-Symptoms/dp/006257129X?ref=mp_s_a_1_1&tag=mumsnetforum-21&qid=1532260786&refinements=p_27%3AIzabella+Wentz&sr=1-1

Seven years ago, I was mostly in bed by 8pm, bloated, had masses of hair loss, acne, and felt beyond fatigued. It hasn’t taken me seven years to get to my current state, but over time, on the right supplements and being strict with my diet, I essentially live a normal life, so please don’t give up hope.

Sorry. I reread your post (I’m in America and pre morning caffeine 😁) and see that you do have TPO antibodies. So yes, you have Hashimoto’s. Rethink of this as an autoimmune condition that just happens to attack your thyroid, but essentially all autoimmune conditions are systemic, and if doctors took out your thyroid, your body would develop another autoimmune condition.

You need to get on dessicated thyroid and off thyroxine, as it sounds like, with your levels jumping around in that manner, you may have issues converting T4 to T3. Unfortunately your GP is likely to be of much use, nor a bog standard endocrinologist. Functional or integrative medicine is where it’s at when it comes to thyroid treatment, and those people tend to operate privately.

Check out the website Stop the Thyroid Madness as a starting point.

Thank you - I’m glad you’re feeling better to some extent now.

Hashimotos is what I suspect based on the fluctuations but neither set of antibodies has ever been conclusively high enough (TPO gas ranged from 10 to 22.4, TGAB never higher than 15).

I’m not on any thyroid meds - I hoped the 5.95 TSH would be enough for them to trial treatment but they wanted to repeat in 3 months, so that’s coming up in a few weeks.

I’m gaining weight, I have acne covering my face, chest, back even my arms, hair loss, vertigo, palpitations, crippling fatigue, numbness in my back, burning in my feet and legs, brain fog, anxiety, the loss of sex drive, heavy periods, shorter cycles and about a hundred other things. Doctor says it’s fibro but that doesn’t explain most of the symptoms I have whereas hypothyroidism would explain them all.

The treatment for thyroid disease in the UK is a disgrace (I’m a Brit so I will criticise). Here in the US and in many other countries you’re considered hypo if your TSH is above 3, and they’d get you on treatment right away. No wonder you feel as if your life is on the toilet. I felt exactly as you did before I started thyroid meds.

Who is currently doing the testing and monitoring—private or local GP?

Sorry—that should read in the toilet!

I’ve also that US specialists consider the correct dose to be 1mcg per 1lb bodyweight. I was diagnosed 15 years ago and still only on 75mcg. In the US I would probably be on 125mcg. I hope you get this sorted OP.

I’ve been doing it myself (there are companies over here you can order blood tests through) - last test my gp did was last June and it was fine. It’s only really since February this year that my levels have started going up.

It really seems to be a lottery what my levels will be on any given day, hence hedging my bets by doing another private test a week before the GP one, so at the very least I can continue to show the variability. I doubt 5.95 is the highest it’s been or that 1.64 is the lowest.

The whole thing is incredibly frustrating. I also know that morphine suppresses TSH production and I’m on it every day so I suspect without that it would be even higher.

Oh and yes, knowing I could easily get treatment in almost every other developed country is infuriating and is pushing me into a black hole to be honest - eleven years I’ve been living with this, 7 years since I had to quit my career because I couldn’t function, and I’m just being left to suffer until some numbers on these tests get to the UKs proscribed high level. It’s infuriating.

If this lot of tests aren’t enough for a trial of treatment, I’m going to look into a few consultants who’ve been recommended to me. If they cant help, I’ll try to find someone in functional medicine. If not, I guess I’ll end up yet another British woman who’s having to buy NDT on the bloody internet. I really don’t want to do that, it doesn’t feel very safe to me, but I can’t live like this much longer.

Are you having your blood test early morning? I was told by a nurse your TSH is highest in the morning and decreases as the day goes on.

With my private tests I’ve been doing them all first thing (6am) - earliest I can get in for my GP tests is 9:15am so I’m just going to make sure I haven’t eaten.

yanbu
If you have hashimotos disease, its not going to go away and you WILL end up on medication. Your doctor should be treating symptoms, not numbers.

Have you ever been tested for coeliac? Can cause similar symptoms and gluten can cause issues with the thyroid too.

I’m sure I have been tested for coeliac in the past, I don’t have any major gastric issues and certainly haven’t noticed a particular reaction to gluten.

Have you had other blood tests as other deficiency issues can go hand in hand with thyroid problems.

I always get full blood count with ferritin, b12, vitamin d. It's good to see a baseline for all of these.

Luckily my tsh was very high when dx so there was no issue with trialing meds, I'm now on a mix of t4 and a small dosage of t3 which I find effective. I'm in Ireland so different system but ultimately I found going to a forward thinking endocrinologist privately was best.

I know it's hard to persevere when you feel so lousy I hope you get some assistance and relief soon.

I don't think we can say Hashimoto's based on what you've said so far, though is possible. Also, if your TSH and free T4 have been high and TPO within your normal levels with your GP, it is understandable they have not treated yet. I don't know which lab you've been using, but if not an approved one they may not accept your levels as valid.

There is a variation in TSH and free t4, and there are also sick euthyroid where another illness can cause levels to be off too. It would not be unreasonable to ask GP for endocrinology referral, but as you know T3 replacement is rarely used in this country. There are real risks to use of T3 and there is some debate within the endocrinology community worldwide about when and how it should be used. I'm a Dr but not an endocrinologist- I have a very good friend who is and I know it's really not as straightforward as some would like to believe (and I am also hypothyroid).

sorry- when I say your TSH and free t4 are high, it should have read: if your TSH is normal (on one occasion high) but t4 always within range, it is understandable that your GP may not treated you. Additionally, your GP believes that some of your symptoms could be put down to fibromyalgia (and I cannot comment on whether your GP is right or wrong on that point). Given that scenario, I can understand why your GP would not just start you on treatment for a condition which they are doubtful you have and not completely backed up by biochemistry.

So a referral to endocrinology may well be way forward.

Are you on morphine to treat pain in relation to what you think may be a thyroid issue, or is that a separate problem?

Your doctor suspects fibromyalgia, and certainly autoimmune diseases often come in pairs. I have Hashi’s and I’m coeliac (diagnosed at the same time). I wouldn’t be surprised if ultimately you find out you have Hashimoto’s and fibro.

Re buying NDT online, how on earth does that work? Is it something manufactured out of Asia?

Have you had you crp done? Hashimotos has the same symptoms as many autoimmune diseases and fibro. Please don't rush to start treatment unless it's conclusive and don't go ordering ndt over the Internet.
A rheumatologist needs to say its fibro after ruling everything else out. Have you questioned all immediate family members whether they have any AI diseases or whether your grandparents did if they're no longer alive?

The morphine is for endometriosis and adenomyosis, which was diagnosed 14 years ago - lots of surgeries, every hormonal treatment, you name it. Now no longer on anything apart from pain relief as it was just messing me up more (and in fact I think all of this started when I spent a couple of years on a drug that affects the pituitary gland).

Rheumatologist will not see me because my GP has already “diagnosed” fibro (by which I mean, I told him my symptoms, he ignored at least 50% of them and diagnosed me with fibro which fits maybe the other half, or at least mostly). He actually referred me to the rheumatologist, who wrote me a really shitty letter saying that there’s nothing he can do for someone who’s already been diagnosed with fibro. So I’m basically just left to rot. I have no quality of life at all.

There’s a lot of history of thyroid disease in my family, on both sides, including hashimotos, surgery to remove thyroid nodules, and an uncle who had thyroid cancer in his 30s (not worried I have that, I don’t have the symptoms, but I come from a long line of shitty thyroids!).

My B12 and ferritin are fine. My vit D and folate were very low, I’ve been supplementing since the end of May, was retested a few weeks later and they were rising so hopefully that will be resolved by the next lot of tests.

I know that taking thyroid meds can be dangerous, but I also know that undiagnosed hypothyroidism can be dangerous, not to mention the fact that I am a shell of a person right now. There’s no way they’ll refer me to an endocrinologist (and I’m not sure how much use it would be either - I have a friend with serious thyroid issues and she told me that the ones she’s seen locally are utterly useless unless you have diabetes).

It is really frustrating when other countries treat at a much lower level. I’m not saying it absolutely is hypothyroidism, I’m just desperate to feel better and want to try whatever might work. The correlation of my symptoms seems overwhelming to be honest.

Forgot to add - CRP was checked in May and was low in normal range, so no concern there.

As for buying NDT, I know there are forums with very large numbers of users doing it, I think mostly from Germany although I don’t know the details. I understand why people do it because I am reaching rock bottom, but it’s not something I want to do. If I did, I’d never get a diagnosis (if that’s what it is, of course).

Keep forgetting stuff...

The only other thing that’s been consistently questionable is in my blood count, my MCH is always above normal range. Nothing else showing up consistently (plenty of dodgy levels of things during pregnancy but all resolved afterwards)

You have a lot going on. I also have adenomyosis. In fact, I’ve never met anyone else with it! I also have PCOS. I’ve been taking inositol for a few months, and that’s definitely helping the sex hormone part of the puzzle, shortening my cycle to 29 days from 34, clearing my skin, and giving me more energy.

You could try something like Rhodiola (low dose) to support your adrenal glands and give you an energy boost.

Great that you’ve started a Vitamin D regimen. Also look into the benefits of selenium supplementation for thyroid health, and a teaspoon of powdered magnesium each day will help alleviate some of your aches and pains. It was the first supplement my doctor recommended, and I honestly couldn’t live without it.

That’s interesting. I know my hormones are a complete mess. Started on the drug I mentioned earlier, was on it for two years, my sex drive completely vanished and stayed gone for over five years, and didn’t return until I came off all hormones. This recurred when I breastfeeding, once I stopped it eventually came back but as soon as I went on the pill it went again. I’ve been off the pill for months now and it’s completely absent - based on my previous experiences I’d expect it to be back long before now. Doctors of course aren’t interested in this but it’s destroying my marriage. That’s just one of the many issues I’m trying to deal with.

Adenomyosis absolutely bloody sucks. They’ve offered me a hysterectomy but honestly I’m terrified of it messing up my hormones even further (they wouldn’t take my ovaries but I’ve heard of this happening to people after tubal ligation only, and to be honest I don’t fully understand the hormone issue since doctors don’t care and I’ve had to try and figure it out myself).

On top of all this one of my sons is having a lot of tests for some potentially really serious health issues and I’m struggling just to get out of bed. Not sure how much longer I can push on like this before I completely collapse.

Op until I was treated I had three years of feeling awful then ok for a year when on a low dose then feeling awful again and ended up being over medicated I still felt terrible I was low in iron and vitamin and I wasn’t aware of this had this been sorted out may have felt ok on the medication I was on

The GP first who put me on Levo (and it isn’t a motivate drug it does have side effects) understood the issue then I saw a number of GP’s that didn’t and my medication dosage just kept increasing then again thankfully saw another GP that looked at all my results realised something wasn’t quite right and I was referred to an Endocrinologist. I am only on 50mcg now I had gone up to 150mcg. Thyroid issues are very complex and really a referral is needed

Only good advice I can give is change your GP it is finding one that has an understanding of the complexities or if you can a referral

I feel so much better now. Weight taking a while to shift (but this was not the worse side effect though other people seemed to think it was ) but more importantly I am feeling good again, emotions are not low or flat, have a sex drive and not feeling totally exhausted all the time

I am not constantly thinking about when can I have a nap

Google Hashimoto’s and gluten. You might not realise you are having a reaction to gluten, but it could be affecting you more than you know. I hope you can get medicated and start to feel better very soon. I remember the days of brain fog and bone crushing tiredness before I went on thyroxine, so I really sympathise!