I have come clean to her about me stopping my medication and whilst she was surprised that I stopped it she was also surprised that the TSH dropped by itself. She appreciates that I’ve found this tough and has persuaded me to start over. I also explained to her that the Endo stated in her report I had Vitamin D deficiency (43.6 with normal range >75), which should be controlled and its symptoms to resolve within a few months (Endo’s words in the report). She now agrees with this finding.
She offered to put me back onto the Fultium D3 at 800IU – I’m guessing that’s the standard treatment and dose – but I said that I managed to get hold of a bigger dose of Vitamin D at 3000IU. She’s happy for me to continue to use this and thinks the Vitamin D deficiency will resolve itself much quicker than in a few months as stated by the Endo, but she isn’t so sure I should be taking Vitamin B12 supplements (1000mcg) as I am not deficient in this and my latest result was 363, only in the bottom third of the range (180-900). So she’s a bit dubious about me using B12 supplements and has said that she does not think I need folic acid supplements even though I am low in this. (4.1 with normal range 4.6-18.7)
Iron she definitely wants me to keep going with although the rise in Ferritin has been slight (15 in August, 22 in December – Spatone was started in October. Normal range is 30-400). That was only on one dose out of a possible 4 I'm allowed per day and so I might need to increase the extra doses even more slowly than expected if I am getting sick on them.
She is also concerned that my Endo appointment has been moved from 15th April to 20th May.
She can only go on my last TSH result conducted at the surgery unfortunately, as she is unable to access the blood test results arranged by my Endo at the hospital. The practice receptionist has also said she cannot access them either – the only thing that both of them can see from the test done last week is that it was conducted at the practice.
Based on my last TSH result of 2.7 (0.27-4.2) my GP has suggested that as my TSH was not bad at that time – and was not controlled by medication – I restart my dose as follows:
* 25mcg – 6 weeks
* 50mcg – 6 weeks onwards before next blood test is done.
I’m now trying to put a treatment plan in place (I have no luck whatsoever with ventures like this…) and have decided not to do too much at once. So I will look at doing the following:
* Starting the thyroxine at the restarted dose (25mcg) straightaway
* Re-introducing the iron (Spatone) 2 weeks in at 1 dose per day for a week and moving the dose up by 1 the following week after that.
* Re-introducing the Vitamin D 2 weeks after the iron supplement at full dose (I think that should be ok as I can’t adjust the dose from a spray bottle!)
* Re-introducing the Vitamin B12 3 weeks after the Vitamin D at full dose (again, I think that should be ok too…)
* Look into buying folic acid supplements IF I can get them cheap enough. I have noticed that Holland and Barrett do something called Beetroot Powder, which sounds interesting. Not sure how effective this is though as there are no reviews on it.
* Holland and Barrett also do Floradix but only the Magnesium one. Not sure if this contains iron.
I’ve tried and tried to call the Endo throughout yesterday but she is not available when I get through to the department. All I can do is to keep trying but I don’t know how much more of that I can do. I will also tell her that my medication has been restarted due to me stopping it previously.
Are they likely to post the TSH/coeliac results to me if this keeps up? I only ask as when I had the Short Synacthen Test done back in January (which was all normal) the results were posted to me then and without me requesting them. Just wondered if this is a routine thing that they do…In which case I could be waiting until the end of this week for them!
If the TSH is much higher than what my GP’s dose is set for, I guess I can adjust it as necessary.
Are they likely to include a prescription slip for me to hand in to the chemist regarding a new dose? After all, they were the ones who ordered the test and this is surely something my own GP shouldn’t be doing if the test was not ordered through them.
hi jo , firstly ANY doctor /specialist that you see and prescribes medication to you HAS TO INFORM YOUR DOCTOR OF ALLTEST RESULTS AND MEDICATIONS GIVEN this is so that your gp's records will not conflict with any other medications that he/she gives you [ as some will have an adverse reaction with some others ----- and your gp has legal responsibility for your overall health ---- secondly it is brilliant news that you are now trying to at least try and allow your gp to help you ......don't forget you are just entering that damn great tunnel , but , with perseverance and help YOU WILL GET OUTSIDE INTO THE SUNSHINE ........<<<hugs>>>>....alan x p.s. little afterthought I have always found that TOTAL HONESTY [good or bad ] to my gp has helped not only my lady but also me ------ I smoke too much , I drink too much [ beer only ] but he knows and accepts this and treats me accordingly .....alan x
Sorry, by the Endo having the blood test results and the GP practice not, does that mean that the Endo is now not being honest with my GP? I might have misunderstood, knowing me. LOL
Jo xxx
Hi Jo,
She is not right about the folic acid level being OK, here is some research suggesting deficiency state under 8:
"Serum folate levels under 8 μg/L (or 18 nm) should be considered as a decision limit for folate depletion because a positive effect on homocysteine was observed. Fasting serum folate concentration should be preferred for assessing folate status."
I think you will feel much better with the addition of folic acid alongside everything else you are doing. Show your doctor the research and ask her to prescribe 5mg folic acid for 4 months which is the standard length of time to correct a deficiency, then you can reduce to a maintenance dose. Show her this:
"Folate deficiency can be corrected by giving 5 mg of folic acid daily for four months for adults (until term in pregnant women); up to 15 mg daily may be required in malabsorption states. Maintenance is 5 mg every 1-7 days.
Any underlying cause - eg, coeliac disease, should be treated."
She is also incorrect in making decisions about your B12 status based on the serum B12 test, there are better tests you can have here, although need to be off supplements:
I had no idea my folic acid should be anywhere near 8! I'm not doing very well here!
I was informed by my lifestyle therapist to include B12, so my GP does not know I take B12 supplements. I don't know if I could look into any more tests, thanks all the same, as I am unemployed and watching my money. Sorry. But I will look at the links you provided.
Well done Jo,you did great and your plan sounds good too.
I agree with hampster about the folate levels. Why do doctors choose when to follow the range and when not to? It really frustrates me. They won't do anything for you if the tsh is in range but if your folate is out of range they think it's not problem? Grrrrrr
It is very important for folate and ferritin to be at a good level for your thyroid medication to work effectively. Again...how do doctors not know this?!?!
Floradix you can order online on Amazon much cheaper than in shops. I got my big bottle of 500ml for £10.59, in H&B it was over £18.
Folic acid if she won't prescribe the 5mg then maybe go to Tesco. A bottle of 90 tablets at 400mcg will cost you well under a pound (around 60p). You could take several...maybe 2 in the morning,2 at lunch and 2 in the evening or whatever you feel comfortable taking. I would though give it a last go with your gp with the links that hampster gave you. Print them out and show them to her. That is what I did to get my gp to prescribe the 5mg dose.
Yes, my doctors don't seem to realise that iron and folate levels need to be optimal for my thyroid meds to work. I actually didn't know myself until reading your reply.
I'll look into getting the Floradix through Amazon if it's cheaper. Thanks for letting me know about this!
I didn't realise either that Tesco do folic acid. As long as the tablets are small that's fine by me. I can really take that many in one day? Wow!
I'll print out the links out Hampster provided me and show them to her at the next appointment.
I have read that you will need to keep the iron medication away from your Levo - I think you are aware of this from before - just a gentle reminder ! Your B12 is oh so LOW ! It needs to be near the TOP of the range. hampster1 has such good knowledge on the subject so do follow her advice. The amount of B12 in the blood that can be used at a cellular level - where it's needed - will only be about 20% of your result. So very little. If you overdose you will just pee out the excess....
Getting the iron, folate, B12 etc. up to optimal levels will help the T4 tablet convert more efficiently into the active T3 and you will SO much better.
Keep on with your journey Jo and all will be well....little steps are all that is needed....
I think I knew about the iron supplements being kept away from thyroid meds, but how long should I leave it between the thyroid meds and the iron supplements? I forgot this part, sorry.
My GP said from last time that as long as my B12 is in range that doesn't mean I am deficient. So I have had no prescription for it, only the Vitamin D.
Iron needs to kept away from Levo for about 4 hours I believe. Type Iron into the Search Box on the Green Bar at the top of this page and something should pop up to confirm.
Yes of course your Doc is right to say you are in range - but that is not good enough for people with Hahsi's or Thyroid issues generally. Sadly they do not receive that much training at Medical School - when you are fit and well being in range is just fine. When you are one degree under it needs to be HIGH in the range. Again type B12 into the Search Box and you will find a relevant post. Not all the B12 in the blood can be used at a cellular level where it is needed - only about 20% - which is why it needs to be near the TOP to have enough to help your body. It is involved in so much including the conversion of T4 into T3.
Have another read of this website to help you learn more about B12 and what happens if it is low. You can buy B12 from the Internet - I seem to remember you were taking some - so I would keep that going. If you were taking B12 when you had the last test then that would skew the result and not give a true reading.
Yes, I have B12 but because my GP has said in the past I don't need it I have not been taking it. So the result would not have been skewed in that respect.
Thanks for letting me know I have to take Levo away from iron for 4 hours.
Jo xxx
I've broken down the plan a bit more but it might need some adjusting...
* Starting the thyroxine at the restarted dose (25mcg and then 50mcg 6 weeks after that) is a no-brainer. It has to start from tomorrow if taking it in the morning. I will be taking this at the same time in the morning, say around 9am. I'm just a bit worried about sleeping in on some days and missing the dose time by an hour.
* Re-introducing the iron (Spatone) 2 weeks in at 1 dose per day for a week and moving the dose up by 1 the following week after that. Yes, this will be and should be 4 hours away from the thyroxine so I will be taking the iron at around 1pm. Am I right in saying I cannot take any calcium-containing products (milk, for example) anywhere near the iron? Doctor did not inform me but I did hear somewhere (might have been the chemist I spoke to when first prescribed the Ferrous Fumerate) that I am not meant to take calcium/milk containing products near iron. Please correct me if I'm wrong.
But, again, I might miss a dose or two if I am out and about at that time and therefore unable to take the iron with me if on the move anywhere. So the dose(s) will be out by an hour, maybe more, if that be the case. Another problem.
* Re-introducing the Vitamin D 2 weeks after the iron supplement at full dose. Should I be keeping the Vitamin D away from anything else I take? Vitamin D I can take on the move as it is in a handy spray bottle. If the Vitamin D is safe to take anytime given my circumstances and plan put in place then I will just spray once whenever. I think that's ok. I hope so!
* Re-introducing the Vitamin B12 3 weeks after the Vitamin D at full dose. Should I be keeping the B12 away from anything else I take as well? Vitamin B12 I can take on the move too as they are in lozenge form. So they're like sweets I can carry around. If the Vitamin B12 is safe to take anytime given my circumstances and plan put in place then I will just take one whenever.
*Folic acid supplements - I can get a liquid/sublingual one online for just under £5 plus P&P. Should I be keeping this away from anything I take? Again, in a small bottle and can be placed under the tongue so easy for me to take if on the move. If the folic acid is safe to take anytime given my circumstances and plan then I will just take one dose whenever.
If any of this sounds misguided or you have any questions about it please let me know. I just want to make sure I get this all spot-on to work.
Anything else I should be taking? I'm open to suggestions.
You need to stop B12 supplementing 4/8 weeks prior to testing so as not to skew results.
I was folate deficient and prescribed 5mg folic acid for 30 days only. I was annoyed but it did the trick and is now very near top of range. I'm not sure whether also supplementing B12 which has doubled to 725 had any effect.
When endo wants your dose adjusted she will either give you a prescription to collect from the hospital pharmacy & you give the pink copy to your GP practice or write to your GP with the adjustment required for future prescriptions. My endo writes to my GP, cc me, summarising consultations and stating medication and dosing.
I don't know when they're likely to test me again as the GP said I was "within range" and by the looks of things they could want to test me at any time! I was not aware of having to stop supplementing B12 4/8 weeks prior to testing. So I guess I'd have to hold fire on taking the B12 at all?
Sorry, did you mean to say that Vitamin B12 may have helped with folate deficiency. I think I misunderstood.
Should I still keep on trying to call the Endo? I've still heard nothing despite making several calls to her.
Why do you need to wait before supplementing B12? Your recent test was low in range, so it's unlikely you'll be retested within 6 months, if at all. You won't OD on B12 so why not take it?
I wondered whether supplementing B12 might have helped to raise my folate. It may have been the 4 weeks supplementation. I don't really know.
Sorry, I think I've misunderstood. The GP has put that they want to repeat the blood test for thyroid 12 weeks from now so that would mean that they wouldn't test for B12.
I think the test was a one-off thing just to see if I was deficient/low.
Endo has not said for my Vitamin D to be retested but because she put in my report that my symptoms are likely to improve within 6 months, that makes me wonder if she is likely to want to retest Vitamin D when those 6 months are up.
Jo xxx
Delighted to see you so positive, Jo: good for you.
I'd just say - Holland & Barratt are expensive, their stuff isn't very good and their staff not knowledgeable. I've just picked up some inexpensive folic acid from Boots, in the 'vitamins for pregnant women' section. (Yikes!) Apparently a lot of women who aren't pregnant are using these tabs. :0)
in reply to
Hi Humphrey, thanks for your reply.
Yes, H & B are expensive. I only pick up things on offer from there. I found that their staff are not very knowledgeable too. I had a very bad tooth abscess one time and the advisor I spoke to said "not sure what you could use, but maybe try some B6..." I just walked straight out again.
Funny how folic acid meds in Boots are in the vitamins for pregnant women! Fancy that! I'll look out for that when I'm next in there so thank you for letting me know about that. Much appreciated.
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But I will look at the links you provided.
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