I’ve finally managed to gather enough strength to ask for help with these results. I apologise in advance for the long story, but I wanted to give a bit of context. After telling everyone what a good GP I have, he has managed to reverse my opinion in 1 visit.
In summary: I visited another GP in practice in Jan with sudden onset of swelling+pain in hands/feet (unable to walk or drive), painful joints, extreme fatigue, pins+needles and tinnitus. I found this site and possibility of thyroid issues while investigating symptoms prior to appointment. I was sent away with a diagnosis of 'virus' and no investigations.
The swelling subsided (over 2 weeks) but all other symptoms remained so I did a basic thyroid test with Medichecks. This showed normal TSH but low free thyroxine (10.8 range 12-22). So, I went to my own GP to discuss this and he offered to do further tests (and from what I'd learned on here I thought this would include T3, antibodies etc as well as Vit B & D, iron etc). Instead I got a rerun of TSH & Thyroxine with a new range conveniently showing me as normal (from what I now know about ranges I can't believe they don't use either absolute numbers or symptoms to diagnose - naïve I know). Also got negative CRP, which I'm pleased about, low iron, and a full blood count which also showed nothing.
I took my iron prescription away and started on this without any expectations, and I wasn't disappointed. I've had minimal improvement in fatigue but not much else. So I ordered a Thyroid Check Ultravit from Medichecks with the following results.
Shows an increase in my iron, as expected, slight increase in Thyroxine (but still below range), and Vitamin D deficiency. Notes with the test advised on loading dose for Vit D. As I wanted to run this past my GP, I took these results back to him thinking I’d done him a favour by just getting them done myself but was shocked by his reaction. Totally dismissed the tests, very annoyed I had not just accepted his results, and told me I could get Vit D over the counter, as if I needed to be told. He said that as my calcium was OK the Vit D didn’t matter, but I from what I’ve read once my Vit D is low enough it will affect my calcium – is that correct? He reluctantly prescribed Vit D, but when I got it home found it was a maintenance dose of 10mcg, and not the 80mcg Medichecks advised. I’ve ordered my own and started taking them a week ago. I was just happy with all of the results that came back OK, because I know that a lot of you guys have suffered much worse than me, but he was so unhelpful that I now have no confidence in him for anything. I have been seeing him for 20 years and thought we had a good relationship but it now seems that unless I want to discuss my antidepressants he’s not interested.
With the above results I was hoping some of you could help me figure out if I need to keep thyroid issues in mind as possible cause of my symptoms, as its just Thyroxine which is low, or would that just be me looking for a label to attach myself to. I’ve never had any issues with physical health before so I don’t know if I’m over reacting. However, I do know that I struggle to get to work each day and this has now affected my mental health again to the point I struggle to see the point in anything, including posting this. The fact that my employer is not helpful either is just another added pressure. But I know that you are all so supportive that any advice you give is objective with no outside influences. I do tend to minimise my own experience – there’s always someone worse off etc – but trying to be stoic is just not helping anymore.
I’m not taking anything other than iron and Vit D, because I’m so confused I don’t know where to start, or if I need to. And I am a perfectly intelligent, capable woman who normally has no problems figuring out what to do for the best.
If anyone could give any advice on what to pursue and what to park I would be so grateful. Sorry for the rant.
Written by
Om289
To view profiles and participate in discussions please or .
Normal TSH, below range FT4, low level of natural thyroid hormone (Total T4), very low FT3 (not surprising due to low FT4 but shows your body is attempting to make some of the active hormone that every cell in our bodies need).
Taking the normal TSH and below range FT4, and I am not medically trained, and I am not diagnosing, but what could be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed
You could do some more research, print out anything that may help and show your GP, or maybe a different one.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at tukadmin@thyroiduk.org for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
**
ACTIVE B12 43.900 pmol/L 25.10 - 165.00
This really is rather low. Anything below 70 should be referred for MMA test according to this article
If you have any then list them for your GP to support your request for further testing, you need to rule out (or in) B12 deficiency and/or Pernicious Anaemia.
FOLATE(SERUM) 5.06 ug/L 2.91 - 50.00
Folate and B12 work together. Your folate level is very low. The recommended level is at least half way through it's range. You may not be offered folic acid, you could supplement with a good quality B Complex containing 400mcg methylfolate (eg Thorne Basic B). However, do not start folic acid or B Complex until further investigation into your B12/Pernicious Anaemia has been done and B12 supplementation started (possibly B12 injections).
This is severe Vit D Deficiency and your GP should be ashamed of himself just prescribing 10mcg D3 which is just 400iu and wouldn't help raise the level of a sunburnt flea. You could either go back and quote the NICE Clinical Knowledge Summary which says cks.nice.org.uk/vitamin-d-d...
"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.
For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."
Each Health Authority has their own guidelines but they will be very similar. You can find yours by searching Google with "Vit D Deficiency treatment for ...(your area)...." Go and see your GP and ask that he treats you according to the local guidelines or this summary and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result at the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
If you don't want to do that you can buy your own D3 and take the equivalent of the loading doses up to 300,000iu then reduce down and follow the information about finding your maintenance dose once the recommended level has been reached. Good quality D3 with minimal ingredients are Doctor's Best or Now Foods D3 softgels.
Taking D3 usually increases calcium level. Your doctor wont know, because they are not taught nutrition, but there are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from any thyroid meds.
Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, again four hours away from any thyroid meds
Did the full blood count show MCV, MCHC and MCH within range?
Did you have an iron panel done? There is more to iron than just ferritin.
For thyroid hormone to work (that's our own as well as replacement hormone) ferritin needs to be at least 70, preferably half way through range.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...
As you have a prescription for iron tablets, then take each iron tablet with 1000mg Vitamin C to aid absorption and help prevent constipaton. Always take iron 4 hours away from any thyroid meds and two hours away from other medication and supplements as it will affect absorption.
**
You will notice that I have mentioned some supplements need to be taken 4 hours away from thyroid meds, other supplements and medication need at least 2 hours. I've mentioned this because I do think that you may possibly get a diagnosis of central hypothyroidism eventually and may be given Levothyroxine, so it's something to bear in mind.
I am almost in tears reading your reply. A relief to be taken seriously, I am starting to think I was going mad. There's a lot there for me to read up and I appreciate the time you've taken to give me so much help. I will spend some time going through this, but just wanted to say thank you. So glad I found this place!!
There are some things there that I had thought were ok but you've pointed out some things I need to look at again - B12 and folate - and I hadn't realised my iron was such a problem.
I'll get my specs on and get reading- thanks for putting a wee smile back on my face 😀
It's awful how hypothyroidism is misunderstood, mis-treated, and we patients made to feel we are a nuisance and are imagining our problems. You will get lots of support here, all based on patient experience.
At least you haven't got the added problem of autoimmune thyroid disease (Hashimoto's) as your antibodies are nice and low.
From the short time I have been working through the information you gave me I have managed to find out that there is currently a petition going through Scottish Parliament in respect of testing protocol and combined T3 & T4 therapy, and that one of my local MSP's is involved in petitioning parliament for changes to the current guidelines. I feel a bit better already just getting myself more informed about what's going on.
And I don't have any links but I'm sure Google would come up with quite a lot about Lorraine Cleaver which would interest you, she also has a Facebook page.
Don't worry Om289 ~ this forum is full of folks in a similar boat, so you are among people who understand😊. As you can see by SeasideSusie's response ~ lots of help and advice from knowledgable members. You will recover your previously good health, just a lot to learn and take in ~ not easy when you're below par.😕 Just ask any questions and those 'in the know' will help. GPs are useless in the main😧
Thank you Mamapea1. It is so difficult to be assertive when you are not firing on all cylinders. It is reassuring to have found somewhere to find help from people who have knowledge and experience. Like I said, revising my opinion of my GP in light of this.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Medichecks test results thyroid B12 etc please help?
Would appreciate advice on these results
test results (part 1), any help would be appreciated.
Hi, l would appreciate help with blood results
