SeasideSusie if you can or anyone else can help please 😊. I have a telephone appointment with my gp in about 3 weeks time. I take 100mcg eltroxin every day except 75mcg Monday and Friday. I also take rivaroxaban 10mg daily for subsegmental pulmonary embolism diagnosed last year post back surgery which the dr insists I continue despite the fact I was on crutches for 12 weeks but that's another story. I'm sure he won't be too impressed with me having private bloods taken but I just don't feel "right" and haven't for a couple of years despite bloods being within range.
I understand my vit D is slightly low, Ferritin is raised and my thyroid results are in range, the latter a surprise as I certainly don't feel wonderful at the moment.
Thanks for reading my essay x
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Very close to top of the range. As it's an inflammation marker, the lower the better. It's just showing some possible inflammation somewhere but as it's a non-specific marker there's no clue as to where.
Ferritin 250 ug/L (Range 13-150. Optimum for females >27)
Again, this might be raised due to inflammation or infection unless you're supplementing and it's taken your ferritin too high
Folate - Serum 8.4 ug/L Range > 2.9
Medichecks range is 2.9-14.5 and folate is recommended to be at least half way through range, so that's about 9+ and you're pretty close to that.
Vitamin B12 137 pmol/L (Range 25 1-165)
Excellent result. Are you supplementing?
Vitamin D 47 nmol/L (Range 50 - 200)
Yes this is far too low, it's recommended to be 100-150nmol/L by the Vit D Society and Grassroots Health.
To reach the recommended level you could supplement with 4,000-5,000iu D3 daily and retest in 3 months.
Once you've reached the recommended range then you'll need a maintenance dose to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, 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 an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3.
D3 aids absorption of calcium from food and Vit 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 such as hardening of the arteries, kidney stones, etc.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
I have always done very well with Doctor's Best D3 softgels, very small, budget friendly, a good clean supplement with no excipients, just D3 and extra virgin olive oil. Some people use BetterYou oral spray but this does contain a lot of excipients.
For K2-MK7 I like Vitabay or Vegevero brands.
Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.
Magnesium comes in different forms, check 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 if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
TSH 1.26 mIU/L (Range 0.27- 4.2)
Free T3 3.8 pmol/L (Range 3.1 - 6.8)
Free Thyroxine 18.3 pmol/L (Range 12-22)
The aim of a treated Hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges.
Your TSH could do with possibly being below 1, your FT4 is 63% through range but your FT3 is a paltry 19% through range. You could ask for an increase in your Levo, maybe to 100mcg 7 days a week but I don't think this will make a lot of difference, certainly not to your FT3 result and it's low T3 that causes symptoms. T4 is a pro-hormone, a storage hormone, that converts to T3 which is the active hormone that every cell in our bodies need, hence low T3 causing symptoms.
As your nutrients are generally OK (except for Vit D) your results seem to suggest poor conversion of T4 to T3 and you may benefit from the addition of T3 to your Levo.
Many GPs don't know about or understand T3 and they are not allowed to prescribe it initially, you would have to be referred to an endocrinologist who, if they agreed that you are a poor converter, would initiate a trial of T3 for 3 or 6 months. If they then agreed you could stay on it after your trial your GP would take over the prescribing. Not all health authorities will prescribe T3 but quite a few do. Not all GPs like to take over prescribing because it's an expensive medication and the surgery has to pay for it out of their budget. Most endos are diabetes specialists and have little to no understanding of thyroid disease, many have no understanding of T3 and how to dose with it and interpret results when on T3. It's a pretty poor do all round.
These are nice and low and don't suggest autoimmune thyroid disease (aka Hashimoto's). However, antibodies do fluctuate and you could get a different result next time but I'd be very suprised if they went over range.
Thank you for taking the time to answer my questions, very much appreciated and helpful. I do still have a lot to pain post surgery, it hasn't helped unfortunately so this may be the inflammation causing raised crp and ferritin. I'm not taking any supplements including B12, nor have I for a few years. I'll get some vit D3 as you suggest then try to discuss with my gp. I'd like a referral to endocrinologist but not hopeful, as you say they're not that interested in thyroid, only diabetes, my experience years ago too. From a cost point of view, as a retired practice nurse I know how tight the surgery budget is and I'm quite sure they will not be keen to prescribe t3 even if they could. Thanks again for your help, its been very useful and I can at least put my point across now, fingers crossed x
Hi all, I have spoken to my g.p. regarding the above results, after 4 weeks waiting for a telephone appointment I'm not sure it was worth it. I asked re T3 and possibly referral to endocrinologist who had an interest in thyroid. He couldn't think of one in the county or elsewhere and said we are trying to get people off T3 as it affects the heart and isn't prescribed much anymore, it's old fashioned. I'm not sure after reading many posts on here that that's correct nor can I find any research to back this up. He has agreed to recheck my ferritin then discuss the results 🙈. I guess that's another 4 week wait. I feel not listened to and that I'm a hypochondriac but I'm sure i should be better than what i feel now. Any suggestions please?
Unfortunately you've hit the same brick wall as so many members here.
possibly referral to endocrinologist who had an interest in thyroid. He couldn't think of one in the county or elsewhere
Well, he could make an effort and find one if he felt so inclined!
said we are trying to get people off T3 as it affects the heart and isn't prescribed much anymore, it's old fashioned.
No, not old fashioned, more like they don't understand it and wont admit it. The reason they want people off T3 is because it's expensive but there's a way of finding out how many prescriptions for T3 are issued by area. SlowDragon has the details of how to find this out.
I'm not sure after reading many posts on here that that's correct nor can I find any research to back this up.
No, he's not correct.
I guess that's another 4 week wait. I feel not listened to and that I'm a hypochondriac but I'm sure i should be better than what i feel now. Any suggestions please?
There's the softly softly approach or the full on "I'm not going to live like this any more" approach. I'm afraid I've got to the rebellious stage, personally I would be listing my symptoms and relentlessly reiterating how my symptoms affect my life, and if the GP can't help then I'd find a way of doing it myself even if it meant sourcing T3 from the internet. I know it's difficult to get face to face appointments at the moment but if you can then I'd take someone with you who may be able to advocate on your behalf if you find it difficult. Way back when I first became ill with hypothyroid symptoms, the GP kept blaming it on the fact that I had two young children so of course I'm going to be "tired", this went on for two years until my husband came with me and said "do something with her because I've had enough". That did the trick, my first ever thyroid test! That was back in 1975 and it seems like nothing has changed since then.
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3…...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Initial prescription for T3 must be via endocrinologist. Ideally pick an endocrinologist who is NHS and Private. See them privately for initial prescription….then aim to transfer to NHS
Private prescription enables access to Thybon Henning 20mcg tablets via specialist pharmacies in U.K. at £1 per tablet (typically daily dose is 3 x 5mcg or 2 x 5mcg)
Another test to consider is Dio2 gene test….can help get T3 prescribed…assuming you test positive
Thanks again, I can't find my ccg at all on the list, I live in North Shropshire so it's Shrewsbury, Telford and Wrekin as far as I'm aware. I feel totally confused by all this and would happily pay to see someone privately then transfer to NHS as suggested. I'm 64, a retired A&E then practice nurse who used to be able to take control of anything. What's happened to me? I just want some of my old self back, my g.p.'s don't seem to listen, when I can speak to them that is 😥
Thank you so much for taking the time to reply SeasideSusie and SlowDragon , very much appreciated. I thought the Dr was blagging re T3 and that it is really down to cost. I am usually quite assertive, a retired practice nurse, so I am quite confident normally but I'm just so tired of fighting for myself after so many years. I started off hyper, then had Graves. Ok for about a year then it restarted so I had radioiodine treatment resulting in hypo. I was reasonable till last 4 years and now just can't stabilise at all. Ended up on antidepressants last year for 5 months till I took myself off them. This is just so not me hence I'm guessing it's thyroid related. I certainly feel better since starting vit D3 a couple of weeks ago, not that the dr was interested, never even asked what strength I am taking, have ordered vit k and magnesium now to try soon.
I've never had a scan so I will ask for this and I've also decided to get an urgent phone call for blood results and not wait another 4 weeks. I'll ask for a referral again too.
I will look into a private endocrinologist but from working in Shropshire the ones I know are mainly diabetic specialists though the guy who treated my graves is still working I think. Also I've never heard of dio2 so that's very interesting.
Ferritin 250 ug/L (Range 13-150. Optimum for females >27)
Folate - Serum 8.4 ug/L Range > 2.9
Vitamin B12 137 pmol/L (Range 25 1-165)
Vitamin D 47 nmol/L (Range 50 - 200)
TSH 1.26 mIU/L (Range 0.27- 4.2)
Free T3 3.8 pmol/L (Range 3.1 - 6.8)
Free Thyroxine 18.3 pmol/L (Range 12-22)
Obviously vitamin D is very low, and needs improving to at least around 80nmol and around 100nmol maybe better
Folate perhaps needs improving too
What vitamin supplements are you currently taking
Ferritin is often high after menopause.
But your conversion of Ft4 (levothyroxine) to Ft3 is very poor
your FT4 is 63% through range
but your FT3 is terrible at 19% through range
Likely to need addition of T3 prescribed alongside levothyroxine
Will pm you
Email Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3
...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Thank you very much for your reply, I wish I was half as knowledgeable as you but struggling to get my head round it despite my medical background. I have received your message and will follow it up. I do feel better since taking vit D3 and now on magnesium, will add in K2 soon, taking it slow as I'm on rivaroxaban for a pe since op last year which they said was incidental so I'm on it for life, but that's another battle to fight. I became hyper in 2007, eventually diagnosed after palpitations, ectopic by a cardiologist who saw me and said he suggested I return to my g.p. to sort it out! Things settled with meds but then I developed Graves. Eventually burnt itself, and me out and had no meds for a couple of years then kicked off again so I was given RAI, no consultation or offered anything else, I just took the tablet. So here I am now on my journey feeling as though I'm seesawing between hyper and hypo with my symptoms. Weight gain, tired but restless, ectopicsand slight hand tremor at times. Thanks again for taking the time to read x
Me again, I got a text message yesterday re blood test results, next appt another 3 weeks ago I insisted on an urgent telephone dr appointment this morning. I got a sharp consultantation with a doc I'd never seen before to say my ferritin had dropped to 420, she says this is only just outside the range ang acceptable as it is down, some people have 1,000, I agree but this is my results and want to know why it's raised. Said it was probably due to inflammation post tonsillectomy, that was in March, she said it could be 8 weeks post op, well I make that 13 weeks but she just wouldn't listen. Another blood test booked for next week, to exclude haemachromatosis,but she's expecting that normal, as I am. Totally frustrated now and sick of being fobbed off, I can't seem to find an endocrinologist on line that seems interested in thyroid conditions. Happy to travel if someone can point me in the right direction. I'm aware no recommendation on this post but would really appreciate a p.m. if that's allowed please. Thanks for reading x
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