Hi all. Bit of history here. Was diagnosed with hypothyroidism (alongside very complex mental health problems) aged 17, been on levothyroxine and a whole host of psychiatric meds since then (as well as having polycystic kidney disease, that's a rant for another day!)
Recently I've been struggling a lot. Had blood tests done in October but my GP deemed the results "normal" (TSH 4.11) and didn't up my meds. Since had a mental breakdown and been signed off work for the week. Was speaking to a family friend who's a retired GP and she was livid at how I've been dismissed so many times, so I did a private blood test through MediChecks and some of the results came in now, but I need to send off more to get a more thorough result on things like B12, vitamin D, iron etc. However the thyroid results speak for themselves - totally off the scale so explains why I feel so crappy!
Immunity thyroid peroxidase - 55.5 (should be between 0-34)
TSH - a friggin crazy 10.4 (should be between 0.27-4.2)
I called my GP and presented them with these results and they sort of brushed it off, but I explained how debilitating it is and they said to up my levothyroxine. Refused (once again) to refer me to an endo and said I need to do a blood test through the NHS to confirm that the results are accurate.
I have mixed feelings - partly grateful that the results validate how rubbish I feel, partly frustrated at how many times I've been dismissed, and totally fed up of a) struggling so much and b) having to advocate so hard for myself. I'm exhausted from the whole ordeal and it's the first time in 7 years of struggling that it's sort of hit me that this really is something chronic, and my thyroid is quite literally attacking itself. Also nobody's ever really explained the thyroid peroxidase side of things/what it means, I'm aware it means it's an autoimmune disorder/most likely Hashimotos but I don't really know what that means!
Apologies for the ranting but words of kindness would be greatly appreciated x
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heynaomiii
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I'm sorry you're having such a rough time (and have such a startlingly STUPID GP).
When you do your next NHS blood test, please remember to have it as early as you can in the morning (before 9am) when TSH is highest, fasting, and 24 hours from your previous dose of levo.
Once you are on levo, you should have regular 25 mcg-a -day increases every 6 - 8 weeks until TSH is always less than 2, probably less than 1, free T4 (and free T3) are nice and high in range AND you feel properly well!
You are right to be looking to test, and optimise, your key nutrients, See if the GP will test these too (I've had some success with mine by saying that these are the tests recommended by Thyroid UK)
Until you're on a decent dose of levo and have good nutrients, I'd not try and see an endo - they aren't obliged to see you, even if the GP refers, and most of them are pretty useless on thyroid as they really only deal with diabetes. In due course, you can send off for the list of recommended endos (or ask for recommendations in a separate post). You don't have to see the nearest person but must obv be reasonably convenient to get to
Post you next blood results in a new post when you get them and the lovely people here will help you to understand them x
Thank you so much for your lovely words, really reassuring and so nice to be in a community of likeminded people! Fortunately I managed to (somehow) nab a blood test appointment tomorrow morning at 11am which is pretty good, however nobody ever advised that not eating and not taking tablets will make a difference, so thanks for that tip! X
Update - NHS GP results confirmed my TSH is 10.37. Not sure how high classes as dangerously/alarmingly high but it does of course explain how I feel! X
OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.
Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:
"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.
The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."
After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.
There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.
(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)
Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.
There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!
However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.
But, there are things the patient can try for him/herself to help them feel a bit better:
a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.
b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.
c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the theory is, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.
One last point: the high antibodies say you have Autoimmune thyroiditis. It could be Hashi's or it could be Ord's - we don't hear Ord's mentioned very often these days. But, the difference is that with Hashi's, you have a goitre. With Ord's you don't have a goitre and the thyroid shrivels up to the size of a pea - a small pea.
Thanks so much for your super informative response! Lots of information I wouldn't have otherwise heard of, I really appreciate you taking the time to explain things
Hello greygoose hope your keeping well , I wonder if you would have a look at my latest results, I did get my thyroid antibodies done , I still don’t know if I’m a hashimoto or not things have changed quite a bit since my last test was done , I couldn’t believe it , although I can’t say I feel any different at the moment wonder if you could tell me your thoughts please would be very grateful. Kowbie
I'm sorry you have such a bad time with your health, its hard enough coping with MH and then your body throws a curveball at you as well. There a lot of connection between MH and thyroid function.
A lot of us have been fobbed off with antidepressants, uppers, downers, CBT and so on, when all we needed was proper thyroid treatment. We're not depressed, menopausal, neurotic or hysterical, we are ill because our thyroid doesn't work as it should.
You wouldn't tell a patient with heart disease to think happy thoughts and it will magically go away so why they assume a malfunctioning thyroid will suddenly get its arse in gear is ridiculous.
You are undermedicated, as I was, despite several dose increases of Levo my TSH remained stubbornly high. Although not as high as yours. I'm now on a decent dose, 125mcg and I do feel better.
I'm sad to have to tell you that many Endos on the NHS are equally clueless as your GP. I've been having problems with bad itching on Levo and my GP wrote to the Endos asking for advice as nothing was helping.
Their twopenneth? Cut out Levo for 6 weeks, because that won't affect my TSH at all and I won't feel terrible after a week, not able to function. Most Endos are diabetes specialists with a bit of thyroid mixed in, rather like a builder who knows a bit about plumbing. Needless to say I ignored their "advice".
There are some good Endos out there and Thyroid UK keep a list of good ones but I think they are mostly private so that means paying and its probably an ongoing cost.
Get yourself tested on the NHS for your thyroid, read Fuschia Pink's advice on testing protocols to get the highest TSH level. And gently insist on Levo increase.
Definitely a HUGE link between thyroid and MH, I was diagnosed with hypothyroidism literally the same day I received my BPD diagnosis. Tried hundreds of antipsychotics, antidepressants, mood stabilisers, which all have proven useless despite being drugged up on v high doses, whilst knowing deep-down that if my thyroid issues were managed the other stuff would lessen down. You're so right, the stigma around MH issues makes asking for help even harder as I'm seen as being a hypochondriac/neurotic, very vicious cycle!
Partly grateful I've not seen an endo after the feedback you gave, the more I learn, the more I realise how little medical professionals know about the disease. Fortunately I've got my blood test tomorrow so fingers crossed! Really appreciate all the help
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