Hypothyroidism & fatigue.

[Hollie089]

Diagnosed with hashimotos about 2 years ago, had mild fatigue which was well managed after a few weeks on levothyroxine. Fast forwards to today and I am absolutely exhausted, due to this I have no interest in anything, I'm usually up and about all the time on days but not now, by lunch at work I'm aching all over and ready for bed, obviously it's getting me down!

I've had a full set of bloods (had some bad stomach pains thought to be gall stones, all clear on an ultrasound however) and all are normal other than tsh of 7.6

Is it reasonable to be this tired with what is still considered subclinical hypothyroidism?! Does anyone else feel like this with a TSH similar?

I said to the GP that before they had the TSH test, underactive thyroids were medicated to the point of having overactive symptoms and then the dosage was reined back to reduce that

Also given that my tsh was the highest the GP had ever seen she said she reckoned it had started packing up after dd was born, and I did not get diagnosed until she was nearly three, so I feel I was running on empty for so long my system is probably completely broken and unreliable!

I buy natural desiccated thyroid myself now and just request bloods from the GP whenever I feel off.

The UK guidelines are out of date and don't represent a large majority of patients.

Have a look at stop the thyroid madness. X

B12 deficiency often goes hand in hand with thyroid issues and isn't tested as standard, the doctor needs to tick the box for it when ordering your blood test. Find out whether it's been tested, get it tested and come back with the number. They may well tell you it's 'within range' when it's at the bottom of the range, and most people feel terrible unless it's higher, e.g. in my area 350 would be considered fine but I only feel normal at 800-1000 (I now have injections every 2 months). As others have said, ferritin, vitamin D and so on are also good to get checked. Aim to be in the upper third of the lab ranges.

The nice guidelines for pregnancy are currently under review and due to be published soon.

It's a disgrace how women who are pregnant or ttc with thyroid issues are treated in the uk.

British thyroid foundation have been working hard on this. It's worth while joining them as they need to hear patient's experiences in order to feed back to the people who in charge of the protocols.

www.btf-thyroid.org/pregnancy-and-fertility-in-thyroid-disorders

I'm feeling rubbish at 2.5.

You must atop taking supplements containing biotin a few days before a blood test; it can affect the outcome and make results seem better than they are.

I have just read an very interesting page around how much tsh fluctuates due to various things. It's 'flatter' if you're taking thyroxine but still can vary a little. More important to note if not on thyroxine.

You must have tests around the same time - as early as possible, and take thyroxine after the test.

Also, I'd long wondered about the menstrual cycle; tsh is higher mid months due to high oestrogen.

Interesting page...

thyroidpatients.ca/2020/01/21/7-ways-to-raise-tsh-without-reducing-thyroid-dose/

NeurotrashWarrior very useful link. I read that medication for hypothyroidism should be increased early in pregnancy. My GP actually lowered mine and a week or so later I miscarried.
I went to see a Private Gynaecologist to have tests carried out and when I asked him if lowering my medication would have caused it he said no, clearly incorrect going by this information. I’m into the menopause now so not really relevant anymore but hopefully it can help others. Thank you.

Oh my gosh I'm so sorry, that's utter malpractice. I'm so sorry that happened to you.

I had extreme anxiety in my first pregnancy as I'd only just found out most women do need to. Those with a partial thyroidectomy may not but most with hypothyroidism or thyroidectomy do. I had a battle getting a Gp to listen and and to monitor.

The problem is that women need to have this management in early pregnancy via Gp but most gps aren't aware. Midwives aren't aware. You would see a consultant at the 12 week scan (which can be 14 weeks) when it could be too late. Hence the btf campaign. But they have really struggled to be heard by the royal college of mws.

On top of battling for clarity at the Gp I later found out (via the BTF - brilliant organisation) that I just happened to be on a batch of thyroxine that was faulty. So despite several raises tsh was 13 by the time I was 14 weeks. I then went the other way as it was raised right up and brands switched. Baby was fine but had iugr. I lost my marbles. He's a very bright happy child. In retrospect I was taking some/enough. It's worse if you're not fully replaced and as you say, even drop.

Someone I know with a baby at the same time had it raised for her first child but it was missed for her second and she was very unwell by the second trimester. Another woman I know had to really fight to be heard regarding a higher tsh that it should be when ttc. It really shouldn't be happening.

Very interesting thread

I believe thyroid treatment is a feminist issue. Most patients are women. It affects women more due to pregnancy and it seems, hormones. It's not just pregnancy loss; there's a potential slight issue for baby development.

I developed it after going on the pill; I was probably already slightly hypo but the oestrogen meant I needed more. I never had a proper explanation at the time and had to work it out by myself in the days pre Google. I've had to work all of it out myself actually by hunting out info.

I only stumbled across the pregnancy issue due to a radio 4 programme, inside health, where a consultant was talking about the need to be monitored and go up and how most gps didn't know this.

I've had friends who were gps query my knowledge on this which I find frustrating.

I only learnt about the biotin issue with testing via the BTF and HealthUnlocked just this autumn. It's in berocca and prenatal/breastfeeding tablets which I've always taken.

My tsh was 450 when diagnosed and my t4 and t3 were nil. Antibodies off the scale. So no, it wasn't post-natal depression. Ended up in hospital with palpitations and they diagnosed me. Took me 8 years to get stable. I now take 325mg t4 and 30mg t3 daily. I am only ok if my tsh is completely surpressed. It took almost 5 years of battle with the endo to get t3.

I'm all up shit creek again now though, as menopause has hit.

Thyroid care in the UK is a pile of shit.

Took me bloody years to be diagnosed. It only came to light after birth of DC #2, I was going backwards and forwards, was put on antidepressants etc before they arrived at underactive. Since then had a diagnosis of pernicious anemia as well and have 2 monthly jabs which help. My ferritin is always low, and my standard iron quite often, no-one seems to know why 🤷

I do agree with the posts saying that thyroid care is shit here and also that its a feminist issue.
I have had issues but never bad enough to be treated, other than when I was hyper thyroid for a bit and was sent off to see a hopeless NHS endo.
I think the best way to deal with it is to be your own advocate and consider going private if you can.
There are some good groups on Facebook which can be a good place to start.

My god it makes me glad about my doctors reading these, I’m on 175mg losing weight feel good, if I feel I need to be checked I just ask my doctor for a blood test. I was discovered to have hypothyroidism when I asked for a cholesterol test, my gp at the time decided to test my thyroid at the same time

I think half the trouble is that symptoms can be diverse within different people and attributed to other things and that different doctors have different levels of what they consider to be abnormal tsh

can you buy thyroxine privayely anywhere? I don't mind paying gor it but really feel i need a higher dose. If you know whete you can buy it in uk please pm me.x

NeurotrashWarrior interesting, I have a twin sister who 15 years ago went to our GP after I was diagnosed. She had the same symptoms minus the miscarriages. She was borderline and as she was single and not planning a pregnancy our GP wouldn’t prescribe medication.
Recently she was tested again and told the same thing.
I never thought to question our situation as I assumed maybe wrongly that Drs know best.

@NeurotrashWarrior that’s really interesting. I’m the opposite (overactive) with Graves’ disease but I was told by my endocrinologist that I should not try to conceive for 18 months to two years as I will still have graves antibodies. The link you posted seems to suggest that it is manageable during pregnancy. I think I need a second opinion!

Your problem is that you are on synthetic thyroid hormone which is the worst meds for thyroid sufferers because it does not have all the required hormone it only delivers T4 which your body will never convert to T3 which gives you energy. Get onto natural meds if you can such as Armour, NP Thyroid, Thiroyd etc. many you can buy online. Educate yourself by reading the Stop the Thyroid Madness blog. It will change your life.

I have Graves Disease (over active thyroid) and before I was diagnosed I was exhausted and drained and could sleep 15 plus hours on a weekend. I also put on 12kg over twelve months because I was so exhausted my activity level dropped off to basically nothing. I saw my endocrinologist every 6 weeks (with blood tests) for a couple of years and was put on medicine to reduce my levels, however my levels were so high the medication (even in large doses) had limited effect. When they suspected I had thyroid cancer they whipped my thyroid out (did not have it thankfully) and I have been on thyroxine ever since (though my levels are still all over the place), but if I’m feeling flat I just take a bit more and if I’m feeling hyper, I’ll miss the following day. I still saw my endocrinologist 6 weekly (continued this with a new endocrinologist when I moved to Australia) until a couple of years ago when he moved to New Zealand. Since then, my GP prescribes my thyroxine and I self manage (as I didn’t like the other endocrinologist she referred me to), although occasionally she makes me take a blood test to review.

Having too much thyroid hormone can cause extreme tiredness and I recommend you get a referral to an endocrinologist for a full investigation in order to improve your quality of life. Good luck.

Thanks for all the replies and advice.
I have since passed out at work and had a seizure today (no history of this previously so a bit of a shock) doesn't seem to be epileptic in origin according to the doctors but currently in hospital awaiting results of more bloods, ECG and blood pressure/heart rate all good though. It only started with a dodgy thyroid 🤷🏼‍♀️

Oh gosh, I hope you're ok OP

OP so sorry you're in hospital.
Can I suggest you ask for a copy of your blood test results when they are back or take a photo of them with your phone.

Get well soon

Poor you OP.
I agree, do ask for your results - you are very much entitled to see them.
Post the results here if you like?
Hope you are feeling better x

Try taking your levo with water an hour before your due to eat or consume anything. I have hypothyroidism have done since I was diagnosed at 23. Last year my levels were all over the place so made changes. Gave my levo a good hour to absorb into me system, switched to decaf and stopped having sweeteners/sugar in me warm drinks. I've switched to low fat stuff as it's more healthier on the body, plus I don't drink alcohol or smoke. See if lifestyle changes help. Recently had my bloods done and haven't heard nowt back so guessing everything's alright.