Request for more levothyroxine following results from Medichecks

[TeeDee63]

Hi all,

I’m very upset as had a conversation ( more like a shouting match to be honest) with GP who is insistent that he won’t prescribe more levothyroxine as I’m within range ( after him asking me to send a copy of my medichecks results) because on my request I stated that I should be prescribed iron therapy as my ferritin is below 30 which it has been for a couple of years but they have refused to treat me, I quoted that NICE guidelines say that a serum ferritin of less than 30 is indicative of IDA. He said that my symptoms that I listed could be a result of anaemia and not thyroid related. I said I was going to write to the practice manager as he shouldn’t be going by range when he should be taking my symptoms into account, and also NICE guidelines are approximately 1.6 mcgs per kilo which would equal over 100 mcgs, but he said that’s an approximation if someone is not in range, but Iam. He said there’s too high a risk and he won’t prescribe more levothyroxine. So now I’m being given iron tablets which is fine but no extra levothyroxine so stuck on 75mcgs.

Any advice would be appreciated as I feel I’ve become known as a nuisance by the surgery and need to show clear evidence that I need an increase when I write to the

T x

[TeeDee63]

when I write to the practice manager that was meant to end with.

[Hidden]

Hi TeeDee, It seems to me that you don't need more T4 anyway, you need some T3. It looks like you're a poor converter and you're near the top 1/3 end of the T4 range with a languishing T3. Maybe self source some T3? What are your symptoms like? I wouldn't bother trying to convince the GP of much. They have their archaic guidelines they have to follow and become deaf to anything outside of those.

[Hidden in reply to Hidden]

TeeDee is only 53% through range for T4, no where near 'the top third end'!

TeeDee63 can you try a different GP at your practice?

I know it's frustrating but you might find that improving your ferritin result might improve your conversion and make you feel slightly better.

In the meantime have a look at Tattybogles post about evidence for treatment despite low TSH. You might find some helpful evidence to present to your GP.

[Hidden in reply to Hidden]

Her conversion is still very poor whether it’s 54% or 66% in range, I very much doubt she’ll garner any improvement from

a. Continuing to battle with a GP who won’t give her T4, or

b. Adding T4 to a clearly flagging conversion.

I’d just skip all that extra stress and add T3.

[TeeDee63 in reply to Hidden]

Thank you, maybe that’s my best option. I really appreciate your advice/ suggestion. x

[Hidden in reply to TeeDee63]

whatever happens, you have options 😊 x

[Hidden in reply to Hidden]

Yeah, maybe but her vitamins aren't optimal yet and not everyone can afford to self source T3.

It's also worth giving T4 the best chance because it's the only guaranteed replacement from the NHS and tbh, I'd be over the moon if I could get well on T4.

Also, T3 isn't a guaranteed fix.

[Hidden in reply to Hidden]

T3 is not a guaranteed fix, but her very poor conversion IS guaranteed as it’s there on paper. Why would anyone add more T4 to that situation? It makes no sense to me.

If TD wants to work on their vitamins as you suggest, then the likelihood is that £28/month on T3 will pale compared to all those vitamin and mineral recommendations.

IMHO few are able to get genuinely well on T4 alone, least of all those with this type of conversion.

I feel advising her to chase her GP/add more T4 is a road to nowhere, when people advised me and my own thyroid circle to do such things we ended up just as bad, it wasted time and prolonged time spent ill.

It’s just my opinion. We can agree to disagree.

[tattybogle in reply to Hidden]

i think it's only fair to warn TeeDee that introducing self sourced T3 at this early stage would almost certainly result in the GP reducing and then possibly withdrawing the NHS Levo prescription altogether ,leaving her totally self sourcing all her thyroid medication without a prescription .

the original diagnosis/levo prescription was only given very reluctantly , the GP didn't agree medication was necessary , and the latest NHS TSH test on this dose of Levo was 0,67

So adding T3 would most likely suppress the TSH at this point and freak out the GP.

As a new patient who's only been on levo for less than year , that is a lot of added stress for TeeDee to handle,

[Hidden in reply to tattybogle]

TD could perhaps ask to speak to an endo then if GP won’t assist, which is how it sounds. Either way, my opinion is that this conversion will remain an issue no matter how much more T4 is added.

[TeeDee63 in reply to Hidden]

hi dontforgetcortisol,

Thank you once more for your valued opinion. I definitely think I will need to add t3 in at some point, as this was mentioned by Slowdragon last week upon seeing my blood results. I think I will try the iron therapy and give my body time to adjust to that before introducing t3. You are right though, there is definitely a conversion issue and I appreciate your thoughts, and you taking the time to reply and advise.

T x

[Hidden in reply to TeeDee63]

Hi TD, I’m so sorry to add to any additional stress - please take all this back and forth as passionate people wanting the very best for you! I’m really glad you’ve taken my point on board about your conversion, and I only make the point so vehemently because I struggled for decades when all I needed was some t3. Not to suggest that we are all the same or that t3 will be your silver bullet but low conversion is often only remedied by T3 itself. I hope you feel better on your higher iron levels soon and that you come to some t3 sooner or later, I have a feeling it will make a positive difference 😊 x

[TeeDee63 in reply to Hidden]

Thank you so much, you’re very caring. I do appreciate it and take all advice on board. I do know I will probably need to source t3 but will get the iron optimal first.

Best wishes

T x

[tattybogle in reply to Hidden]

but realistically , it's highly unlikely an NHS endo would agree to see TD at this point even if GP agreed to refer ( also unlikely ) as they have only just issued prescription for iron to deal with the longstanding ? anemia issues which they think may be resonsible for some symptoms . So at the very least i think that Iron issue needs fixing first. .. not that i understand much at all about iron ... but in the past , it seems iron supplementation/ infusion has improved how TD feels.

trying to add T3 before other issues are sorted out often seems to lead to a poor outcome with T3 , judging by other members experiences of trying T3

[Hidden in reply to tattybogle]

yes, I agree low ferritin needs addressing in any circumstances but the initial Q from TD was about wanting more T4, which was what I was drawn to answer.

I think the conversion issue is going to hang around whatever the case, whether one favours of self source or an endo etc.

[TeeDee63 in reply to Hidden]

Hi witchinghour,

I am going to further optimise my vitamins, and now have a prescription for iron so will take that for three months and see how I feel then. If I still feel as I do I will certainly be requesting more t4 and also look to source t3.

Many thanks for replying and advising, I really do appreciate all replies and suggestions on this long journey.

T x

[TeeDee63]

Thank you both for your replies. I will look at Tattybogles post. I know what you mean dontfotgetcortisol it does appear I’m a poor converter but did want to try 100 mcgs and then source some T3. It’s been one long fight with the GP practice to be honest. I will try and raise my ferritin and hope it does improve my conversion.

Many thanks

T x

[Hidden in reply to TeeDee63]

good luck! 😊😊

[tattybogle]

you can use the references in this post to show an increase is safe/ recommended as long as TSH is then between 0.4/ 0.5 and 2/ 2.5 healthunlocked.com/thyroidu...

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

you can use the references in this post to show TSH between 0.04 -0.4 has no greater risks than TSH 'in range' healthunlocked.com/thyroidu....

~~~~~~~~~~~~~~~

Your GP will not increase easily at the moment since you last NHS TSH was 0.67,, and they will of course believe that result rather than your latest private result where TSH is higher. Pragmatically ~ since they were so reluctant to diagnose / treat you in the first place . you may have to wait until you get another NHS test that show higher TSH than 0,67 before you will get anywhere with asking for a dose increase.

The NHS lab will probably not agree to do a repeat TSH test for the GP until it is 3 months ssince your last TSH test that was in range.

[TeeDee63 in reply to tattybogle]

Thank you tattybogle, I think I will take the iron medication and have the iron blood test he is ordering in three months time. If my iron increases and I feel the same and I’ve had longer in levothyroxine so that my body has had time to adjust, then I will try again with GP. Maybe, just maybe my symptoms are IDA related, yet the other GP’s were refusing to treat me as they said I was not iron deficient so it seems it’s all depending which doctor I speak to.

I will try the iron and then take it from there.

Thanks for the advice and for the information/ references which I will keep safe.

Many thanks

T x

[csj113]

Hi TeeDee63 do you have a result for haemoglobin? Low Ferritin with normal haemoglobin is known as IDWA (Iron Deficiency Without Anaemia) - this can be less well understood by some GPs but the treatment, iron tablets, is the same so it's good to see you got those. Anaemia is specifically low haemoglobin.

I would try taking your tablets one every day or even every second day to improve uptake of iron while minimising side effects - this was the advice I got from a private haematologist when I had IDWA. Incidentally i felt a LOT better when I addressed the low Ferritin so best of luck as it may help you with your symptoms. At least if you sort that first you can unpack what is causing them.

[TeeDee63 in reply to csj113]

Hi csj113, thank you for your message. I have low HB aswell and a history of IDA. I thought about the missing one day, I have to take one 210 mgs ferrous fumerate three times a day, so to miss a day is going to mean missing a lot, so I’m unsure what to do. I too am hoping once I get my ferritin levels up, and go on a maintenance dose to ensure they stay up, that I too will feel better and better able to sort out the thyroid issue.

Many thanks for your tip, I will bear it in mind.

Best wishes

T x

[csj113 in reply to TeeDee63]

I can understand that. I was told by the Iron Clinic that when you take a dose of iron your body releases a compound that prevents you absorbing too much iron (which is dangerous) and that this lasts around 24 hours. Sorry this is my non-medical description of it! If you take further doses in that time it is counter-productive. If you find you are really struggling to take 3 tabs per day I think this alternative regime (they told me one every second day or at most one a day) might be worth a try. They commented that many patients become quickly non-compliant on 3 a day because the side effects are intolerable.

[TeeDee63 in reply to csj113]

Thanks for this info. I have heard before a similar thing so will work a way out and maybe take two tablets at a time every other day. Very grateful for you taking the time to share this with me, many thanks T x

[Auders]

morning TD, sorry to hear about your problems. Just an idea what about doing the Dio2 test with Regenerus whilst improving your iron panel? The Dio2 test does take a while anyway. Depending on the result it could help in showing you have poor T4-T3 conversion. Good luck on your journey x

[TeeDee63 in reply to Auders]

Hi Auders, I will look into the test you’ve mentioned. Never heard of it before but sounds like a good idea.

Many thanks

T x

[Auders in reply to TeeDee63]

Hello to you. I believe it can be used to try to get T3 prescribed. The report it’s self doesn’t tell you a lot, if have have one set of dodgy genes or if you inherited both sets of dodgy genes or indeed if you haven’t inherited any dodgy genes. Possibly more likely to get a trial of T3 if you have either one or both sets of genes? I wish you good luck in your journey. At the moment I privately supply T3, I am due blood test next week and depending in results I’ll increase T3 to 6.25mcg x 3 a day. I am considering contacting Roseway pharmacy to see if their prescriber will give me a prescription for T3, I will send them a copy of my Dio2 result to help strengthen my case. Again good luck 🤞 x

[TeeDee63 in reply to Auders]

Thank you Auders, this is very helpful. Definitely a route I will look to take. Good luck with Roseway pharmacy.

T x

[Batty1]

Iron looks low and your B12 .

[TeeDee63 in reply to Batty1]

Hi Batty1 Irkn is low and I’m being treated with iron tablets by GP, B12 is optimal as I had private B12 I je tions and maintain with B12 tablets and b complex.

Many thanks

T x

[humanbean]

I stated that I should be prescribed iron therapy as my ferritin is below 30 which it has been for a couple of years but they have refused to treat me

Personal anecdote...

I used to have huge difficulty getting iron supplements from doctors. In 2013 I managed to persuade a GP that I needed to supplement. But my ferritin was at 20 and was over the bottom of range of 13 so she didn't want to prescribe. I begged and pleaded (it was humiliating) and I remember the prescription (for two boxes of ferrous fumarate 210mg) getting slammed on the desk in front of me as the doctor scowled ferociously at me. I knew from past experience that a prescription given so reluctantly would not be repeated.

But everything changed for me when I took that prescription to my nearest pharmacy. The pharmacist opened her book of medicines and was looking something up. I asked if there was a problem with the prescription. And she said the magic words that changed my life. She said, "I'm just checking to see if it would be cheaper for you to buy them without prescription or whether it would be cheaper for you to pay the prescription charge."

That was the day I learned that I could get prescription-strength iron supplements without prescription with the agreement of a pharmacist from pharmacies in the UK. I stayed on iron tablets at doses high enough to raise my ferritin for nearly two years then spent another five years on a maintenance dose before I gave it up because suddenly my ferritin shot to top of range.

I would never ask a doctor to prescribe iron any more, even if I needed it. I can do without the humiliation and the scowling and just buy it myself.

It is worth knowing what the results in a full iron panel mean because iron/ferritin are both toxic at high levels.

[TeeDee63 in reply to humanbean]

Hi Humanbean, I’ve been reading your posts as recommended by Slowdragon a little while ago. I’ll take the three months supply given ( very reluctantly) by the GP and have the blood test to check ferritin levels which they want me to have so as soon as I’m within range they can stop the prescription. I have ordered Thorne iron bisglycinate and will supplement with those to hopefully get my ferritin levels optimal. What is your opinion on taking iron tablets every other day to maximise absorption rather than every day as directed by GP? I desperately want to get my levels up as feel so unwell and they won’t prescribe more levothyroxine.

Many thanks

T x

[humanbean in reply to TeeDee63]

What is your opinion on taking iron tablets every other day to maximise absorption rather than every day as directed by GP?

I wrote a critique about the paper that originally brought up this suggestion of every other day for supplementing iron a few years ago.

healthunlocked.com/thyroidu...

My problem is that I did the bulk of my iron supplementing before the original paper was even published, so I can only say what I think based on logic not on experience.

Apart from your low ferritin I haven't seen any other iron-related results of yours. You should read this link with its warnings of what might go wrong :

healthunlocked.com/thyroidu...

and for info on iron supplements available in the UK :

healthunlocked.com/thyroidu...

You could either start by taking supplements every day or every other day. Whatever you choose, do that for 6 - 8 weeks, then re-test by doing an iron panel. Then switch to the other plan and then re-test again (with another iron panel) after the exact same length of time and see which one gives you the best increase in serum iron and/or ferritin.

I've just this minute done a check and found that another research group has reproduced the original research. I haven't read it yet, but here's the link :

researchgate.net/profile/Si...

The treatment given in the above link was ferrous sulfate tablets. These are the cheapest iron tablets available and few people tolerate them well. I wouldn't take them myself (I've tried them in the past). I have always supplemented with ferrous fumarate 210mg because I tolerate them fairly well. Other alternatives are ferrous gluconate 300mg and ferrous or iron bisglycinate.

[TeeDee63 in reply to humanbean]

Hi humanbean,

I did have a full iron panel and these were the results:

Serum iron 17,

Transferrin saturation index 28%

Serum transferrin 2.4 g/L.

Red blood cell distribution width = 13.3%

Red blood cell count (RBC) 3.92 10*12/L

I’m not sure what these mean. These were from last May and I was refused iron treatment.

I will take a look at the links and decide about iron daily or alternate days.

I too have been given ferrous fumerate 210mg one to be taken three times a day.

Any thoughts on the iron panel will be welcome.

Many thanks

T x