I posted on here the other day but didn't get any response regarding my results so thought I'd try again - thanks for your help!
I have Hashimotos hypothyroidism.
I went to see my Endo last Friday after having my bloods done a few days before. As my parathyroid was out previously, I had the test early morning as usual as instructed by him. On the morning of my test, I handed over my blood form and the nurse started messing about with the computer like she didn't know what she was doing. She only did one tube of blood which I questioned as the tests were the same as the last few times I had been and they have always taken two tubes of blood before. Anyhow, the long and short of it is, the lab tested for PCOS rather than parathyroid and then completely missed the electrolytes/creatin/urea test! My endo didn't even notice this, it only came to my attention when I was reading through my results printout when I got home.
At my appointment, my endo said my TSH was better now (I'll post results below) and said FT3/FT4 fine (even though they were better last time and he said they needed tweaking!) he was reluctant to up my meds until I told him how terrible I have been feeling for a month now ( I really am feeling unwell at current) - I printed out the symptoms list and highlighted them - as soon as he saw them (there were many!) he then said OK - we'll try you on 75mg levo one day then 100mg the next. The last time my parathyroid gland was out my corrected calcium was too - and on this test the corrected calcium is the lowest its ever been. I'm wondering if this is why I'm in so much pain with my bones?
Please can I have your thoughts on my results? Also - don't know if the results from the wrong PCOS screen may say anything about me/relate to my thyroid problem so if you know anything about them it would be much appreciated - I'm sure people have mentioned sex hormones etc. on here before?
If not can you recommend who I would ask
My vitamin D has gone up now after 3 months of being on 4000iu a day so i thought I should be feeling better now. Please see below my test results and a list of medication I am on - any help on tweaking things with supplements would be much appreciated too. Sorry for the waffling! Thanks for your help!
TSH - 0.86 (0.2 - 4.0) (last test was 1.5)
FT3 - 4.4 (3.5 - 6.5)
FT4 - 16.7 (11-22.6)
Parathyroid - test missed off
Albumin - 45 (35-50)
Calcium - 2.23 (2.2 - 2.6)
Corrected calcium - 2.13 (2.2 - 2.6)
Phosphate - 0.82 (0.8 - 1.5)
Vitamin D - 94.2 (previously 13 then 60)
PCOS Screen
Follicle stimulating hormone U/L - 11
Free androgen index - 2.2 (0 - 4.5)
Luteninising hormone U/L - 64.6
Sex hormone binding globulin - 36 (28 - 146)
Testosterone - 0.8 (0 - 2.7)
Medication:
75/100 levo alternate days (new dose - previously on 75 per day)
4000iu vitamin D3 per day
Tried magnesium but it made me feel unwell however I couldn't find a gluten/lactose free one - I think it may have been this that made me feel unwell rather than the magnesium itself. (Gluten/dairy free due to Hashis)
Thank you!
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Kimmicustard
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Kimmi, if you didn't get many replies, it's because people had nothing helpful to say. Myself, I don't know anything about parathyroids, so cannot help you there. But, are you taking vit K2 - MK7 with your vit D, to help the calcium get into your bones and teeth?
I think your endo was over-cautious to give you such a tiny increase. You are obviously under-medicated, neither your FT4 nor your FT3 goes over mid-range. But, I imagine he was only looking at the TSH, which is quite low, considering your Free levels. But, I don't suppose he's a thyroid expert, is he?
I know very little about sex hormones, but wonder why they tested your testosterone, and not the others. When do you see your endo again to question all this? Because I think you should question whether the right tests were done.
What type of magnesium did you try? There are several different types, and maybe you got the wrong one for you.
Thanks Greygoose - No I don't take K2/MK7 - maybe that's where I'm going wrong?? I will get some sorted. That's what I thought regarding my FT4/FT3 - does that mean that I'm not converting well? Sorry for the questions, I find it hard to get my head around it sometimes.
These are my Endo's specialities listed on his website:
Diabetes
Endocrinology and diabetes mellitus
Endocrine surgery
Obesity
He just seemed a little like he couldn't be bothered when I saw him the other day (maybe he was having a bad day) I just wish I had spotted the results before leaving so I could ask him what had gone wrong and discus them. I just presumed he had looked through the tests and nothing needed discussing as he keeps you in a room for 10 minutes looking at your file before taking you in to see him. I wish we could see the results before going in to see them!
I will be seeing him again in about 6-8 weeks (although by the time they sort appointments its usually more like 3 months until I see him). I think I might phone his receptionist and ask for his email address to question the wrong tests that were done.
I can't remember what sort of magnesium I tried - I bought it from Morrisons in their vitamin range, I didn't realise there was more than one sort - what magnesium in particular should I be taking please?
I think you're converting well, it's just that you don't have enough to convert. Most hypos need their Frees up near the top of the range to feel well. Yours are only about mid-range.
For your calcium, it doesn't seem to be getting into your blood, even. And that could be to do with your parathyroids, but that's not something I know about. But, do you take your vit D four hours away from your thyroid hormone? Could be you aren't absorbing the vit D very well.
It does look like your endo is a diabetes specialist, and they usually believe that thyroid is a doddle, and that we're all making a fuss about nothing. They just don't know enough about it. And, as you noticed, just aren't interested!
Buying supplements in Morrison's is not a good idea! It was probably magnesium oxide you got, and that isn't very well absorbed. The type of magnesium you should chose depends on what you want it to do for you. This article explains it better than I can.
Arr right - I see. So I need to get those levels up a bit then don't I then hopefully that will help - also like you said, it appears the calcium just isn't getting into my blood.
He explained to me previously when my parathyroid level was high that when calcium isn't getting into your system, they kick in and get overworked to compensate. So it seems maybe calcium is my problem. It did take a long while to get my level of vitamin D up - its now 94, however I don't take K2 MK7 as mentioned so maybe this is the key for me. I always take Vit D and any other meds at least 4 hours away from my levo and even make sure I don't eat 4 hours either side of taking it for maximum absorption (I take it at 11pm at night so won't eat after 7pm).
Haha - your comment about my Endo was spot on - that's exactly how he is.
Thanks very much for the article on Magnesium, I will give it a read and try it again and I promise I will stay out of Morrisons LOL! Just out of interest, where do you buy your supplements from please?
Your FT4 and FT3 are too low, so dose of Levothyroxine was too low
Blood needs testing in 6-8 weeks after each dose increase
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Magnesium- have you tried Calm Vitality magnesium powder. It's cheap and easy to use. Best to start on low dose and increase slowly. Too much can cause diarrhoea
Thanks for your help SlowDragon - Hopefully I might feel better with the slight increase in levo then - let's hope it was enough of an increase.
I will have a look now for the magnesium you recommend - its a nightmare sometimes getting hold of vitamins/medication that don't have any fillers in which I react to!
Your parathyroid was doing the correct thing......when vitamin D is too low (extremely common with Hashimoto's) calcium levels drop too, then Parathyroid levels rise to compensate
See on previous posts you had below range folate and low B12
Have these been retested?
Are you supplementing any B vitamins now, if so what ?
Supplementing a daily good quality vitamin B complex, one with folate in not folic acid, will help keep all B vitamins at adequate levels. Eg Igennus Super B (just one a day may be enough) or Jarrow B12
B vitamins best taken in the morning after breakfast
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
Thanks for the above info SlowDragon - I really appreciate it - I will print it off and get everything ordered.
I didn't do anything with my B12 as I thought it was in range - maybe I should look at the whole lot then. I think you said before to introduce just one thing at a time in case of reactions - which in your opinion is the most important for me to start with please? I haven't had any retests in other vitamins, just Vitamin D - they are trying to save money everywhere now aren't they. Thanks again
I would retest full Thyroid and vitamin levels 6-8 weeks after this (tiny) increase in Levothyroxine
Best to only make one change at a time. So ideally just the Levothyroxine as the one change
Perhaps could consider adding small magnesium dose. Or wait until after test
You could save £20 by not including vitamin D in next test as that is at good level now, but important not to go to high either. How long since this test result of 94?
Medichecks Thyroid plus vitamin test
Or
Blue Horizon Thyroid plus ten
These test everything except vitamin D
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven includes vitamin D
Dose of Levothyroxine needs slowly increasing until FT4 is near top of range and FT3 at least half way in range
Many people only get high enough FT3 when TSH is suppressed, which cast numbers of medics incorrectly freak out at
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor please email Dionne at
tukadmin@thyroiduk.org
Professor Toft recent article saying, addition of small dose of T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3
It's unusual to not have a response. Maybe a particularly busy day. 😞
I can only respond to the following and members will comment on the others if knowledgeable.
TSH - 0.86 (0.2 - 4.0) (last test was 1.5)
FT3 - 4.4 (3.5 - 6.5)
FT4 - 16.7 (11-22.6)
TSH is o.k. but most doctors only take notice of the TSH alone and adjust according to its result, particularly when they think it is too low they may try to reduce our dose to make it rise. Some seem to believe that if is too low that will cause a heart problem, but in fact if people have had thyroid cancer they have to have a suppressed TSH.
You mention PCOS and I will give below an excerpt I copied regarding it as many doctors also have misconceptions about it too. It was from one of our deceased Advisers who ran Thyroidscience and it is very important and I am sure so many doctors are actually ignorant when we have hypothyroidism and they seem to know longer know any clinical symptoms at all.
Both FT3 and FT4 could be higher, so you need an increase in dose.
Quote: "Multiple Ovarian Cysts as a Major Symptom of Hypothyroidism
"The case I describe below is of importance to women with polycystic ovaries. If they have evidence, such as a high TSH, that conventional clinicians accept as evidence
of hypothyroidism, they may fair well. But the TSH is not a valid gauge of a woman's tissue thyroid status. Because of this, she may fair best by adopting self-directed care. At any rate, for women with ovarian cysts, this case is one of extreme importance.
In 2008, doctors at the gynecology department in Gunma, Japan reported the case of a 21-year-old women with primary hypothyroidism. Her doctor referred her to the gynecology department because she had abdominal pain and her abdomen was distended up to the level of her navel.
At the gynecology clinic she underwent an abominal ultrasound and CT scan. These imaging procedures showed multiple cysts on both her right and her left ovary.
The woman's cholesterol level and liver function were increased. She also had a high level of the muscle enzyme (creatine phosphokinase) that's often high in hypothyroidism.
Blood testing also showed that the woman had primary hypothyroidism from autoimmune thyroiditis.
It is noteworthy that the young woman's ovarian cysts completely disappeared soon after she began thyroid hormone therapy. Other researchers have reported girls with primary hypothyroidism whose main health problems were ovarian cysts or precocious puberty. But this appears to be the first case in which a young adult female had ovarian cysts that resulted from autoimmune-induced hypothyroidism.
The researchers cautioned clinicians: "To avoid inadvertent surgery to remove an ovarian tumor, it is essential that a patient with multiple ovarian cysts and hypothyroidism be properly managed, as the simple replacement of a thyroid hormone could resolve
the ovarian cysts."[1]
Reference:
1. Kubota, K., Itho, M., Kishi, H., et al.: Primary hypothyroidism presenting as multiple ovarian cysts in an adult woman: a case report. Gynecol. Endocrinol.,
Hopefully the slight increase will help the FT3/FT4 fingers crossed.
The excerpt you copied is very interesting to me - funnily enough about 3 years ago I had an ovarian cyst removed by surgery as it was causing me a lot of pain - they did say that there was a good chance that they could come back and over the last 6 months I have been getting pain again/bloating up to the top of my naval again - like the explanation in the excerpt. Maybe I should go and see my GP armed with the results of the PCOS test that was done in error and see what they say? I have tried to look up the results and is does seem that one of them in particular looks really high compared to what it should be so maybe I have an underlying problem that isn't helping my thyroid!
I think there is some dependence between calcium and vit D, one can drive the other one out of range. I am sorry, I don't know much about parathyroid, I was tested for it once. I think this slight increase might make you feel better, especially if you Free T4 and T3 were in a better shape before introducing hormone. It's normal when you take hormonal replacement to feel sometimes worse in the beginning, especially if the dose is too low as your TSH drops therefore the need for replacement increases. Hope this makes sense
Thanks cupofcha! Yes - at my last appointment my Endo said sometimes when you give it more, it then needs more. I'll be glad when I feel better again - I got diagnosed in June last year! It seems to take such a long time! Fingers crossed for this little dose increase as my TSH is now a bit better.
I know, it does take ages, but don't get discouraged you will get there. I was diagnosed in 2013, felt alright until July last year and then it was nightmare with being extremely overdosed. I am only getting to my perfect dose now so keep it up, you will feel better for sure
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