Have my results back now. My thyroid profile and antibodies are normal as are my B vitamins, inflammatory marker and ferritin.
The results suggest I have vitamin D insufficiency and that, to stop it progressing on to a deficiency, they recommend supplementing with 20-50mcg(800-2000iu) of vitamin D per day for 12 weeks. And to test my vitamin D level regularly. Especially, in 8-12 weeks time to ensure my levels have returned to normal. Then I can decrease the supplements to 10mcg(400iu) per day. Can anyone advise me as to whether a) the doctor will prescribe these tablets and also b) whether they will do regular testing for vitamin D levels?
The test results are these:-
CRP- high sensitivity:- 0.2mg/l range:- 0mg/l-5mg/l.
After my loading dose of 60,000IU a week for 12 weeks I was told I had to buy my own 1,000-2,000IU supplements and take them daily for life. I was also told that I needed to have my vitamin D levels checked yearly but the NHS wouldn't pay for it.
I had two vitamin D tests on the NHS - one to diagnose my severe deficiency - and another 6 months after taking supplements. (There was a few months delay in me being told I had a severe deficiency.) My level was about 61nmol/L when I was retested so I upped my supplements to 4,000-6,000IU for 3 months. My GP agreed with this but even though I was at a new practice told me the NHS wouldn't pay to test me. I then had a private test and my level was over 75nmol/L which is the adequate level in my area.
Roll on a year later and some other people I know who live in my area are vitamin D insufficient. They get told to buy their own supplements and do their own repeat tests. They only have one test on the NHS to diagnose their insufficiency.
Roll on a few years later and I have a private test which indicates I have iron deficiency anaemia. I go to my GP and am offered a vitamin D test as it is over 2 years since I had the last one. I point out the private test results actually measure both my iron and vitamin D.
I know someone in a different area and they are on a completely different regime. They get prescribed 800IU supplements and have to take 6 daily to start with. They have been prescribed them for about 4 years and the number of 800IU supplements they have to swallow daily has decreased. During that time they have had about 2 vitamin D tests in addition to the one that diagnosed their severe deficiency on the NHS.
In general what you are prescribed and when you get tested varies area to area. It also depends on your starting point whether you are severely deficient under 20-25nmol/L or just insufficient.
However people who get maintenance doses on the NHS get prescribed insufficient amounts to keep their levels up and don't get tested enough. There will be exceptions to the testing e.g. people who have bone diseases/disorders.
The dose you are taking to increase your levels is too low. It is June - if your lifestyle was such you could make vitamin D via the normal mechanism then you wouldn't need supplements at all especially at this time of year. You should take 5,000IU per day for 6-8 weeks then go down to 2,000IU. Most people with thyroid disorders find a vitamin D level over 75nmol/L and around 100nmol/L is when they feel best.
I get mine from a local pharmacy - "advantage" of living in an area where the doctors say buy your own supplements the indie pharmacists use it to make some money and stay open.
However SeasideSusie below has recommended Doctor's Best D3 softgels.
Lydia1960 Normal doesn't mean optimal and quite a few of your results are nowhere near optimal or the recommend levels.
Ferritin:- 37.02ug/L. Range:- 13ug/L-150ug/L.
Ferritin must be at least 70 for thyroid hormone to work (our own or replacement), half way through range being the recommended level and I've seen it said 100-130 is best for females. Your GP won't prescribe because you are within the range but you need iron tablets such as Ferrous Fumerate (buy from Amazon) and take one tablet twice daily with 1000mg Vit C with each tablet to aid absorption and help prevent constipation. Finish the packet (usually 84 tablets) then retest.
If Ferrous Fumerate is too harsh, try iron bisglycinate such as Solgar Gentle Iron.
Take iron tablets four hours away from thyroid meds and two hours away from any other medication and supplements as it affects their absorption.
Eating liver regularly, maximum 200g per week, will help raise ferritin and maintain your level once raised.
I think you may have missed out a decimal point from the TSH result, I assume it should be 1.01??
TSH and FT4 are good but FT3 is too low and points to conversion not being particularly good. This could be due to low ferritin so you need to improve that, plus supplementing with selenium aids conversion.
Recommended level is 100-150nmol/L. I think the suggestion given for supplement dose is too low. Your GP won't prescribe not will they retest, you will have to do that privately which City Assays do with a fingerprick blood spot test for £28 vitamindtest.org.uk/index.html
I would suggest 5000iu daily for 8 weeks then retest. When the recommended level is reached you need to find your own maintenance dose which could be 2000iun daily, maybe less in the summer. The 400iu recommended as a maintenance dose is too low.
It's recommended to retest once or twice a year when supplementing to keep within the recommended range.
Look at Doctor's Best D3 softgels which are very good and very reasonably priced
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 thyroid meds.
Magnesium comes in different forms, check here to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
These work together. Folate should be at least half way through it's range. B12 under 500 can cause neurological problems, recommended level is very top of range, even 900-1000.
Your GP won't prescribe. You can buy some sublingual methylcobalamin lozenges 5000mcg and finish the bottle then buy the 1000mcg dose as maintenance to raise your B12.
When taking B12 we need a B Complex to balance all the B vitamins. If you buy one with 400mcg methylfolate that will help raise your folate level. Check out Thorne Basic B (one daily) and Metabolics B Complex (two daily and no fillers/excipients).
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When optimal levels are reached, maintenance doses will be needed to keep them there or levels will plummet again.
Yep. Am taking spatone iron supplements for that already and have been buying liver recently with this purpose in mind...
So I need selenium for the FT3 to aid converting. Any recommended tablets?
Good news about no indication of autoimmune thyroid disease..
City Assays blood test? Is it just a bit of blood required? Just a pinprick? I had to have a nurse visit for this blood test. If I have to have that again, that's quite a bit extra costs involved...
Checking out the rest of your post, it seems quite a number of my tests are low in their levels. It is going to be quite expensive to buy all the medicines that are going to be needed. Not cheap. Is there any dietary advice you can provide that might provide some of the vitamins etc that I need to cut back on some of the tablets I need to boost these levels. Not to mention the ongoing blood tests that will be needed... can diet change these levels towards optimal ones? I don't eat a lot of meat. If I increase this, and other food with the intention of aiding these numbers to optimal levels, could this help? Any advice on that?
Lydia - Spatone doesn't contain very much elemental iron compared to Ferrous Fumerate.
One Spatone sachet contains 5mg of iron in solution. "Scientifically shown bioavailability, as high as 40%, means one sachet can provide up to 2mg of iron."
Ferrous Fumerate contains 65mg elemental iron per tablet.
So your level will take a long time to rise with the Spatone. However, if you're eating liver every week that will help.
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I use Cytoplan selenium because it is a nice small tablet and doesn't have an unpleasant odour which a lot of selenium supplements seem to have. I buy mine when they have their frequent 3 for 2 offers, direct from Cytoplan.
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As antibodies fluctuate, one positive antibody result confirms Hashimoto's, one negative doesn't rule it out though, you would need a few negatives over time just in case the test was done at a time the antibodies were at a low level.
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If you click on the link to City Assays that I gave, there is a picture of the actual test card where you put four blood spots. Not a phial, just blood spots on some absorbent paper. City Assays is the lab at NHS City Hospital in Birmingham, they offer this Vit D test to the public. It is a postal test, they post it out to you, you prick your finger and do four blood spots, you post it back, they email the results to you a couple of days later.
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You will have to research vitamins and minerals in food. You will need to get your levels up to optimal level first but I really don't know how much vitamins and minerals we get from food. Consider that all our soil is depleted of minerals, food is sprayed with all kinds of pesticides and other nasties, by the time we get some of our food it has flown half way round the world so can be quite old.
I've found that iron tablets tend to be quite large and I have difficulties swallowing them. Hence the spatone, but I will persist with liver as it is a good source for iron, as you mention.
Just read your next paragraph. There's small iron tablets then? Great. I'll check them out..
Noted about the blood test for vitamin D from City Assays. Will definitely be looking into that. Thanks for all the information...
My next paragraph is about selenium tablets, not iron, the Cytoplan selenium, they are small. I don't know about the size of iron tablets as I couldn't tolerate them at all so I raised my ferritin level with liver.
Thanks for that additional detail. I shall look into those Cytoplan selenium tablets.. And, yes, I will be finding more recipes for liver to make that more palatable as a food source...
I see on one of those links it gives clear advice on which foods provide the nutrients etc needed to maintain healthy levels of these indicators. So, I presume I will need to take tablets to bring me up to optimal levels, then I can concentrate on using healthy foods to provide all the nutrients etc needed to keep me at those optimal levels for each indicator...?
For vitamin B12 you want it over 500 and you want your folate halfway in the range.
Supplement with methycobalamin lozenges either Jarrows or Solgar for vitamin B12.
For folate take a good vitamin B complex.
Once you have finished the vitamin B12 lozenges just taking the vitamin B complex daily should be enough to keep your vitamin B12 and folate levels up.
Okay. Will take your advice on this. Would increasing my consumption of meat, quite low, or some other food product help to bring my levels to optimal so I won't need to use tablets?
Okay. First things first. To get those tablets and get my levels up to optimal ones. Thank you for all this valuable information, to me. It has been very informative...
Hi, I was diagnosed with Vit D deficiency last year. The Dr prescribed me high dose Adcal D3 for a short period of time, to get my levels up, but once they were up my prescription didn't continue. I was advised to continue taking Vit D, but I buy it myself. I have not been offered any further testing - the Dr reckons as long as I'm supplementing I should be fine so no need.
That seems to be what I am hearing. I will ring my doctor to see what she says on this, as well as all the test results. Expecting her to bluff her way through it all. Costs to the NHS are paramount these days..
Other posters on this forum have been told things like they aren't eligible for any more vitamin D tests on the NHS for x years - x being 2 or 5. In my case I was told to get it done yearly and the NHS won't pay.
Oh and City Assays is a pin prick test you do at home and post in. They are the lab of an NHS Trust in the Midlands doing private work.
Sure. I intend to go there, City Assays, for the next vitamin D test. I will try my doctor, but from what has been said on here, it looks unlikely that she will prescribe tablets or a further blood test...
You may as well try getting a test on the NHS to save your own money. If the excuse given to you by the GP for not doing it is complete s*** then you know how far you can trust that GP.
Your tsh, t4, t3 and antibodies levels are similar to mine when I was first reporting feeling rubbish to the Drs. My GP classed me as subclinical as my TSH was raised. I've since been diagnosed as clinical hasimotos hypothyroidism, yet strangely I feel better than I did before - I'm avoiding meds as I felt worse on them, not advised through the gp and this forum though so don't listen to me on that!
Just out of interest, do you have any digestive issues and/or heartburn?
I have IBS which I take omprazole, twice daily, 20mg. No heartburn, but do have quite a few other serious conditions, like oesophagitis grade 2 and diabetes type 2. .
How did you get diagnosed as clinical hashimoto's hypothyroidism? Could I have this if I have similar levels to you on certain tests? How do they diagnose this? Just a bit worried that, if I do have these conditions, they won't be diagnosed properly.
Will taking supplements help reduce all the symptoms I am having, like short term memory loss, overheating, extreme tiredness etc...
Omprazole decreases your absorption of vitamins and minerals particularly vitamin B12. And infact most people on this forum have found their digestive problems are due to too little stomach acid rather than too much as the doctors have said. If you search the forum there are solutions to it.
In addition long term use of metaformin decreases the amount of vitamin B12 you have stored in your body.
To find out if you have autoimmune thyroid disease - Hashimotos - you need to have your thyroid antibodies tested. thyroiduk.org.uk/tuk/about_... You are unlikely to have this done properly on the NHS so most posters on this forum do this privately through either Medichecks or Blue Horizon using their pin prick tests - thyroiduk.org.uk/tuk/testin...
The NHS treatment for Hashimotos is the same e.g. levo which is why the test isn't done. On here if you are found to have Hashimotos the advice is to go on a proper food gluten free diet.
I did ask them to include this test in with the thyroid one, but was informed that this test, above, included the test for hashimoto's? Will have to check with their phoneline again. Thanks for the update. And I'll ask about metformin. If there is a different tablet to take for diabetes type 2 that won't decrease the amount of B12 stored in my body...
Metaformin is the standard treatment. I've not heard of any others on the NHS. The only thing you can do is manage your hypothyroidism, then once you have that under control and optimally medicated, if you have modified your diet so you don't have sugar spikes and can increase your daily physical activity* then you should be able to reduce the dose. (There has been a poster on here who has managed to do it. )
The best thing you can do is go on the forums on diabetes.co.uk for support and information on diabetes.
*You can only do this once your hypothyroidism is optimally medicated.
Hypothyroidism? Is that what these results are suggesting? They didn't mention that in those blood tests results from Medichecks? Can you explain more, please?
No. I just was having symptoms, especially findingit extremely difficult to regulate my body temperature, but there was no mention of this condition in either the NHS or privateblood tests...
As this is a thyroid support group it is assumed unless people say otherwise they are on thyroid hormone replacement. If you are not then the advice about thyroid hormone levels isn't relevant to you.
You actually have good thyroid hormone levels but IMHO very bad nutrient levels. Some of the signs and symptoms you have, including the worse ones, are likely linked to this. Low levels of vitamin B12, ferritin and vitamin D cause terrible symptoms and signs on their own but combined together with type 2 diabetes it isn't surprising you aren't feeling well.
Unfortunately doctors aren't trained in nutrition and exercise so it is up to you to find out information for yourself and fix it if the NHS won't help you.
@Sandrafrog has pointed out one useful source of information and the diabetes.co.uk forums are full other other people with helpful information.
Sorry for the confusion. I was worried I did have that condition, hence the blood test and postingof this thread.
So it is just ferritin,B12 and vitaminD levels that need increasing? At the same optimal levels you suggested alread?Sorry I didn't follow the proper procedures, but with the symptoms I was experiencing, and being ignorant on this subjec,I thought I might have thyroi problems, understandably. And, yes, I am alreadyusing the diabetes uk forum and, just like here, they give me good advice.So I will put this question to them now I know it isn't a thyroidone... thanks...
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