Thyroid issues?

[Dellylou]

Hi I am posting on here in the hope somebody can help me before I go back to see an endocrinologist. I have been having issues for quite sometime since I had a diagnosis of adult onset Stills disease in April 2016. I was put onto high dose steroids and remained on quite high doses for a year then started to reduce to a maintenance dose which I have been taking now since summer 2017. I have had terrible issues since reducing down low to this level: headaches, palpitations, shakes, pigmentation of skin, dizziness, sleep issues where my dizziness becomes odd and I have high blood pressure then plummeting blood pressure. Very low blood pressure, erratic blood sugar levels, stomach pain, back pain, all over general pain, total exhaustion, moodiness, depressed at times, melancholy, breathing issues when going to sleep, I feel like I have stopped breathing and I have to cough to get breathing again. I also have tinnitus.

I have had numerous blood tests/heart investigations where they say it’s just ectopic beats. They can scare me so much!

I eventually persuaded my rheumatologist to see an endocrinologist after 2 low cortisol results, 171 at 11am and 280 at 9am. I went and saw the endocrinologist and he put me in for a synatchen test and changed my medication to hydrocortisone and fludrocortisone. At this appt he took bloods too. I only have the thyroid tests available and earlier blood tests of B12 and ferritin/iron levels which were taken in September. The thyroid ones were taken in October. Here are my results:

Anti-thyroid peroxidase antibodies 122 (ref range 0-6)

Free T3: 3.3 (ref range 2.6-5.7)

Free T4: 11.1 (ref range 9.0 - 19.0)

TSH: 1.4 (ref range 0.4-4.9)

Vitamin b12: 371 (range 187-883)

Folate 6.7 (range 3.1 -20.5)

Iron: 10.3 (range 9.0 - 30.4)

Ferritin 41 (range 15-204).

Can somebody please help? I go back to see the endocrinologist on 29th November. At my SST I passed the test because at 30mins I got up to 500 (pass range 450) but they took my ACTH bloods but did not check them and discarded them because they said I passed the stim test but I think I’ve an issues with my pituitary/hypothalamus axis and for the low cortisol it’s needing my ACTH to be checked incase I have secondary adrenal insufficiency from long term steroid use. Just to say they have no removed me from hydrocortisone/fludrocortisone and asked me to go back onto the 5mg prednisolone for the time being. Also I have had a diagnosis of fibromyalgia in the past two weeks and they have put me onto amytriptylene.

Does this mean I have Hashimoto thyroiditis, do I need to go on any medication, are my levels in the right range? What is optimal range for the U.K.?

Please help!

Thank you x

[shaws Administrator]

Diseases such as ME, Fibro and CFS were named (I have read) about ten years after the introduction of levothyroxine and blood tests. Before that we were all diagnosed upon clinical symptoms and given NDT (natural dessicated thyroid hormones) which would lead me to believe it was due o a dysfunctional thyroid gland.

All of the following seem very low to me but I will add in SeasideSusie as she is more superior than I am at advising about results.

[Dellylou in reply to shaws]

Thank you for your reply, just not sure how to approach the endocrinologist with all this, I have had a tough 2.5 years since being diagnosed with Stills disease, and it seems I’ve added two extra issues to my health problems - I find it difficult to get any doctor to help me, although rheumatology have been helpful, i found endocrinology very dismissive when it came to the cortiso issue, basically dismissing me even tho I have low cortisol and need to push them to test for secondary addenal insufficiency and now these thyroid results 😞 I really appreciate you tagging in somebody else to see if they can help me. Thanks so much for replying to me. Kind regards Adele x

[greygoose]

You do have Hashi's, yes, because your antibodies are over-range. And, you are hypo because your Frees are low. But, your TSH is low, so no doctor is going to diagnose you, because that's all they look at.

I don't know what you mean by 'are your levels in the right range'. They are in range according to the lab that analysed your blood. Ranges vary from lab to lab, there is no 'optimal range for the UK'. It depends what machine they use for the analysis. But, your Frees are low in-range, and that's what makes you hypo.

Your vit B12, folate and ferritin are also low in range, and really need supplementing. They will be causing some of your symptoms.

I cannot comment your your cortisol levels, because you haven't given any ranges, but it's not uncommon to have adrenal fatigue when hypo. It's just that doctors refuse to recognise it.

Keep testing your thyroid, the levels will change with time. But, make sure you always get tested early in the morning, after fasting over-night, to catch your TSH at its highest.

[Dellylou in reply to greygoose]

Thank you so much for the information, so for the time being I will have to just leave the Tyroid issues and wait to see what happens or will they give me something for the problem that I have?

Unfortunately I do not know the cortisol range for my hospital yet, but talking to adrenal page on Facebook the levels at 9am are low and should warrant checking due to the high dose steroids I’ve been taking for 2.5 years!

These results were from my endocrinology department, not a GP so even though I am low on frees and have those to signify hypo they won’t administer medicine for it?

The machine used at my hospital is an Abbott machine, not sure if that’s any help to anybody.

I seem to be on the low end of evertthubg and that’s why I’m quesitoning if there’s a connection between it all, I know there is a connection between thyroid and pituitary, Hypopituitarism? I’m wondering whether it could be something like that also, as well as the Hashimotos?

Just so many issues and just feel rotten every single day, I’m a mom to a 4 year old and 14 year old and I am a florist too and I find it so difficult most days to get through the day without feeling like death!!

Thanks for your help 😀

[greygoose in reply to Dellylou]

There is no 'medicine' for it. There is not cure or treatment for Hashi's - or any other auto-immune condition, come to that. All you can do with Hashi's is to take thyroid hormone replacement when the thyroid becomes so damaged that it can no-longer make enough thyroid hormone to keep you well. You are not quite at that point, yet, as far as they are concerned.

You have to understand that doctors have a very strange attitude to hypothyroidism. I think that if they could get away with it, they would deny it even exists! They certainly will not acknowledge the distress it causes to so many people. They just do not get the education in med school that they need to treat hypos correctly, and have no knowledge of the signification of antibodies. Even most endos - who, according to their name, should be expert in all hormones in the endocrine system - know next to nothing about thyroid hormones. They are usually diabetes specialist, and know little or nothing about all the other hormones.

I'm grossly over-generalising, there, of course. There are some exceptions, but they're difficult to find.

I'm afraid the name of the machine doesn't help. Sorry. I'm not an expert in these machines.

Yes, you are low in everything. But, that's not uncommon in hypos. Low thyroid hormone can cause low stomach acid, so hypos have a difficult time digesting and absorbing nutrients. B12 becomes low, and that will lower stomach acid even more.

There's a connection between the thyroid and the adrenals, too. When thyroid hormone becomes low, and the body starts to struggle, the adrenals take up the slack. The result is often Adrenal Fatigue - although purists will say that adrenals cannot become fatigued, that is the best name we have for the low cortisol found in hypothyroidism.

The connection between the thyroid and the pituitary is that the pituitary produces TSH - Thyroid Stimulating Hormone. When the pituitary senses that there is not enough thyroid hormone in the blood, it increases output of TSH to stimulate the thyroid to make more. If the thyroid doesn't respond, then the level of TSH gets higher and higher - which is why doctors that don't really understand thyroid believe that all they need to test is the TSH! However, the pituitary can get damaged, or it can have a benign tumour, which will reduce its ability to produce TSH. If the TSH is too low to stimulate the thyroid, then the thyroid doesn't make enough hormone. This is called Secondary Hypo (Primary Hypo is when the problem is with the thyroid itself).

And, we can go further with that, back up the line to the hypothalamus. The hypothalamus needs to stimulate the pituitary to make TSH (I can never remember the name of that particular hormone!). If the hypothalamus isn't working properly for some reason, then that will lead to hypothyroidism, as well. It's called Tertiary hypo.

However, very few doctors have even heard of Central hypo (so called when with don't know if it's the pituitary or the hypothalamus to blame). So, they see a low TSH and erroneously believe that all is well. They don't look at and/or do not understand the FT4 or FT3 results. So, yes, you could have Central hypo as well as Hashi's.

However, that is less clear when you have Hashi's, because levels do go up and down. And, the TSH is always quite a way behind FT4/3 levels, it doesn't change as quickly as them. So, although your TSH looks low now, it could get higher. Which is why you need to keep testing.

I understand how bad you must feel - been there, done that. But, you should start feeling better when you get your nutritional levels up. Low iron/ferritin is bound to make you very tired. And, low B12 will cause all sorts of horrible problems. When my B12 was low, I almost lost the use of my left arm! So, you do need to supplement.

[Dellylou in reply to greygoose]

Thank you so much you have provided me with so much useful info, i will see my endo on 29th and I will ask about my low levels and see if I can get some supplements, I also will ensure I get my ACTH tested incase I do have another pituitary issue that needs to be addressed. I feel like my body has been attacked from all angles of the last 2.5 years and would just like to feel relatively normal for once!! Thank you so much you have explained some issues I was trying to find out and i now have the info I can speak to the endo. Maybe I need to find a endo who is clued up more on pituitary/thyroid issues 😂 best wishes and thank you 😀

[greygoose in reply to Dellylou]

You're welcome. But, to be perfectly honest, you'd do better to sort out your nutritional deficiencies yourself, buy your own supplements. Because of their lack of knowledge, even if doctors do agree to prescribe supplements, it's usually the wrong, and rarely enough of anything.

[Dellylou in reply to greygoose]

I will see if the endocrinologist is any good and if not I will have to buy over the counter medicine but I’ve heard it’s not as strong as prescribed meds 😞 hoping the endocrinologist will have a little knowledge, not holding my breath tho!! I have had some real problems with the NHS, with my Stills etc, refused funding on biologic meds and kept me on steroids for over 2.5, years which might have caused my adrenal insufficiency who knows, I will have more info hopefully next week when I get to meet him again! Thanks so much again 😀

[greygoose in reply to Dellylou]

Sorry, what 'medicine' are you talking about? You cannot buy thyroid hormone replacement over-the-counter in the UK. And, nutritional supplements aren't medicine.

You would be better off buying your nutritional supplements - vit D, vit B12, etc. - on-line. You can't get quality supplements in the High Street. Amazon is a good place to start.

[Dellylou in reply to greygoose]

Sorry I should’ve said not thyroid medication I mean the vitamin suipplements if the doctors refuse to give me anything, the ranges I’m just in, but all on the low side and their thinking is that I’m in an ok range, but some people might need that little bit more, but I’ve had this issue before with my vitamins etc, they’re just so reluctant to give you a prescription for things! I’ll look on amazon, not sure what’s the best ones to get etc but if I talk to the endo first incase he can help!! Thanks again 😀

[greygoose in reply to Dellylou]

Yes, I realise you aren't on any thyroid hormone replacement.

OK, talk to the endo. But, honestly, I very much doubt he'd know anything about it. They don't like prescribing nutritional supplements because they don't understand the importance, and they don't like it coming out of their budgets. And, as I said before, if they do prescribe something, it's usually the wrong thing, and rarely enough. But, you need optimal nutrients for your body to be able to use thyroid hormone.

I would suggest you read through SeasideSusie 's responses to other people in the same position, to see what she advises. She's very knowledgeable about nutrients. But, as a rough guide, what you need is 1000 mcg sublingual methylecobalamin nuggets, and a good B complex with at least 400 mcg methylfolate; vit D3 - capsules with olive oil are the best, but I can't advise what dose - and the cofactors magnesium and vit K2 - MK7. Iron is more tricky, but a good way of increasing your levels is to eat liver once a week, if you can. But, don't start all these supplements at the same time. Leave at least two weeks between starting each one, just in case it doesn't agree with you.