Blood Tests Great But Still Feeling Rubbish, Miscommunications From Dr, Arghhhhhhh!

[Fluffysheep]

Feeling frustrated this morning as you can probably tell! First things first, I would appreciate some advice on my latest blood test results please. I have Hashimotos, been medicated for around a year now with levo steadily increasing. I've been on a dose of 150mcg of levo since Feb this year. Tried to get it upped in April, but failed. Will put Aprils result up for comparison. All tests done first thing in the morning, no food or drink, and last levo tablets taken 24 hours before.

TSH (range 0.27 - 4.2) 0.01 (April result 0.03)

T4 (range 12-22) 21 (April result 18.3)

T3 (range 3.1-6.8) 6.2 (April result 5.1)

Quite a change in results for T4 and T3 I'd say? There are two things that are different for me. One is that I have gone strictly gluten free (extremely careful of cross contamination, separate toaster and different part of kitchen used for food prep), been almost 2 months now. The other is a silly error on my part, I didn't realise the Igennus Super B complex had biotin until recently, so I hadn't stopped taking them before previous tests. I did before this one (stopped a week before). Don't know how much of a difference it makes, but could account for change maybe?

The reason I would like advice is because I am still very symptomatic. Tiredness is the biggest problem, along with brain fog. My joints and/or muscles (sometimes I don't know which) still get sore and this has limited my mobility, which in turn means that I get even more sore when I do things, bit of a vicious circle really. Weight gain which I just can't shift obviously doesn't help with this. Also hairloss has been a big problem.

In April I wrote to my Dr giving her all the reasons why I thought my medication should be increased, but she wrote to local endo for advice and was told everything was fine and I should stay on the same dose. I was told that a referral had been done to one of two endocrinologists that I suggested in my letter (taken from the thyroid UK list). When I checked up on that today I was told I had been misinformed, and that the referral was actually the Dr writing to local endo, and no referral has been done. I am so frustrated about this.

I have a phone appointment next week, and am looking for advice on what to ask for. I know that the mods on here will probably look at my previous posts as they usually do, and tell me that ferritin is a problem. It wasn't tested this time, I was sent the blood test forms and didn't have the opportunity to ask for ferritin to be tested. I am a vegetarian, so suggestions to eat liver are not useful, as I just wouldn't be able to bring myself to do it. I think I was told on here before that it isn't as simple as taking iron tablets, as my other previous results for folate were fine and it could put me above range for that, which wouldn't be great.

Could low ferritin really be the cause of all those symptoms? With the T3 and T4 levels I've now got is it really worth me still pushing to be referred to one of the thyroid friendly endos, and on what basis can I ask for that now that my T3 and T4 levels have risen? I don't think I can claim to be undermedicated with my current levels.

As always, I really appreciate the expert advice given on here.

[SlowDragon Administrator]

Low ferritin levels can be significant issue

Obviously as vegetarian it’s much harder to maintain good iron and ferritin levels

You need full iron panel test to see if you have anaemia or just low ferritin

Eating iron rich foods like pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

I found it took about a year after going strictly gluten free to notice brain fog had slowly diminished

You maybe better with less Levothyroxine (lower Ft4) and addition of small dose of T3 alongside

[Fluffysheep in reply to SlowDragon]

Thank you.

I have asked about taking T3 before, as I have a supply that I bought in Greece late last year, but all the comments have always advised me not to, so I've gone with the general consensus. I would be willing to try it if people think I should, but I know it's a very sensitive drug.

I'll try and get hold of some pumpkin seeds, unfortunately I'm not a fan of dark chocolate (although chunks of it in a brownie always go down well!!). I remember reading about the hair loss when ferritin goes below 50, mine was 50 last July and I don't think it's been tested since then. I noticed my hair was getting a bit thinner in around October last year, but by January it had thinned out a lot. The whole structure of it has changed, I can only use one of those magical no tangle brushes on it when wet, anything else and it just comes out. I've basically stopped blow drying and straightening it apart from the very odd now and again (barely left the house since lockdown so don't care what it looks like).

[SlowDragon Administrator in reply to Fluffysheep]

Getting full iron panel test privately if GP won’t

Most vegetarians need to supplement to maintain optimal iron levels

When taking supplements need to test regularly

humanbean and SeasideSusie are our iron experts

You need all four vitamins optimal before considering adding T3

[Hillwoman]

Biotin supps might still have had an impact, depending on the assay used by the specific lab. You would need to find out from your surgery which lab was used, and ask for the contact details, because it will be quicker for you to phone the lab yourself.

Remember that lab reference intervals are only a guide, and they are not a reliable guide for someone who is already sick. Read Paul Robinson's blog on his website, and also thyroidpatients.ca where you can read fantastic posts about all aspects of thyroid disease, testing and treatment by Prof Tania S Smith. Some of us need to achieve results outside the reference intervals in order to feel well.

Low ferritin is not at all helpful to your situation, and you need to find a way of tackling this. A 'good' level will not necessarily solve your problems either (as OH and I have discovered) but you need to eliminate this as a significant factor in your ill-health. If you can't bear the thought of eating even not-very-iron-rich organic chicken livers - which would come from birds reared with high standards of welfare - then your options are very limited. Try SlowDragon's suggestions.

[Fluffysheep in reply to Hillwoman]

It's not really about how they're reared, although that would be important to me if I was a meat eater, and I've only ever bought free range eggs, it's about eating dead flesh. I've been veggie since I was 8 (and I'm 45 next month!), so other than a life and death situation I would struggle I think, as the thought of it makes me feel sick.

If there was something in a tablet form I would probably consider that.

[Hillwoman in reply to Fluffysheep]

I feel sure you can still buy liver tablets.

[Fluffysheep in reply to Hillwoman]

I'll take a look, not something I had even thought about before to be honest.

[Hillwoman in reply to Fluffysheep]

It's an old-fashioned remedy. Check the ingredients though. Nowadays, 'liver' tablets are often just 'liver support' supplements, rather than the desiccated raw material.

[Fluffysheep in reply to Hillwoman]

I'm taking a quick look now, and that is what I'm finding. Will keep looking, if I'm going to try taking something like that I definitely want it to be the right thing.

[Hillwoman in reply to Fluffysheep]

Just a suggestion, but Nutri and Swanson are two companies who might make the real thing.

[Hillwoman in reply to Hillwoman]

Here are two. Personally, I'd go for one that hasn't been defatted.

amazon.co.uk/Berserker-Desi...

powerbody.co.uk/swanson/des...

[Hidden]

Hi Fluffy sheep. Read recently that similar gluten proteins may have a similar effect to gluten. They can be found in dairy, casein, corn, (maize) coffee ,drinking chocolate powder, milk chocolate. My guess is you should have tests for celiac disease on NHS which will highlight other foods such as dairy egg as well as some grains. As you have sore muscles and have gained weight sometimes with Hashis you can have another autoimmune problem such as diabetes type 1. Having another test if you havent had one for six months might cross it off the list. It is known that coffee even caffeine free can affect thyroid medication. Advice may vary but taking your meds an hour after your coffee might help.

As you have T3 and T4 in your preparation sometimes brands can differ. Some people will confirm some brands upset them. Asking if others on your brand have similar side effects might help. No need to reply.

[Fluffysheep in reply to Hidden]

Hi. I had the blood test for coeliac test, which came back as negative. I've decided to go gluten free as I've seen it recommended on here a lot, and read that it can help with Hashimotos. I feel slightly less tired than I did, but that's about the only change. However, will be keeping on with it for at least 6 months.

I don't drink any hot drinks, don't like them. I do still eat dairy, I know that giving that up might possibly help, but I'm not sure at the moment I have the discipline to do that. As a vegetarian, it would essentially mean going vegan. It's something I might consider in future if nothing else works.

[Hidden in reply to Fluffysheep]

Your ferritin you said was low. This may be attributed to coeliac and thyroid disease. Ferritin is a storage of iron transporter . I had a gluten test on NHS but it came back normal. I still felt low so was given a present of a private food intolerance test through a pharmacist. My grandson had the test and had over twenty or mild allergies about seven moderate allergies and several allergies. As his development is not complete he may grow out of some but is keeping away from the worst ones. The pharmacy group Alphega does finger prick test and full case history is taken .it is a test from Germany with food groups ,a different method of testing. I had multigrain intolerance including wheat barley rye rice maize dairy and egg. I don't like to say other tests are skimpy. Since removing all food intolerances. I am better. The Alphega group is linked to chemists up and down the UK and you can find a map locator with number icons . You might have to look at all these icons as the services they provide are different. You have to look for allergy testing in their specialties. Chemists are open but not for tests here. It might be worth e mailing an Alphega linked chemist listed with allergy service to ask when these services will be available. If you have the other tests recommended by website advisors such as B12 and folates (b)'vitamin d and zinc and they are low or low normal' supplementing may be worthwhile. Vitamin d affects iron and ferritin levels and calcium balance. It is a pro hormone rather than a vitamin and is vital for immune system.

Hard cheese cheddar Dutch hard cheese Gouda and Eddam have tiny amounts of lactase. I can't give these up and don't need to . The tannins in some food such as chocolate might be irritants. Trying diabetes test might help. Met two people on this site who had Hashimotos were not improving and found they had diabetes! Veggie diets are increasingly popular but may be iron and protein deficient so you have to be careful. Take care. No need to reply.

[humanbean]

I couldn't find any results for ferritin in your previous posts. Could you post them again, please, including the reference ranges. And if you have any results for an iron panel and/or a Full Blood Count that would be helpful too.

[Fluffysheep in reply to humanbean]

I last had my serum folate done in Feb, it was 11.1 ng/mL (range of 3-20). I also had a full blood count done, but there are lots of results there and I don't know how to add a pic, which would be easier. Nothing out of range though.

Ferritin hasn't been checked since July 2019. Results for then:

Serum iron level 22umol/l (range 11-25)

Serum unsaturated iron binding capacity 29 umol/l (range 20-62)

Serum TIBC 51 umol/l (range 44-71)

Serum ferritin level 50ng/ml (range 11-307)

Someone was kind enough to go through that on a previous post and suggested that it was just my ferritin was a problem.

Previous to that just my ferritin had been checked in March 2018 and was 58, so it had gone down a little by July. None of the other iron tests were done.

[tattybogle]

Hi Fluffysheep, In relation to the 'how do i ask for Endo referral with current FT4/FT3 levels?' part of your question . I am sure you will soon be coming under pressure from NHS GP to reduce your dose of Levothyroxine, because they will be 'frightened' by your TSH levels. And will warn you of Risks of Atrial Fibrillation/bone density problems. ( if you do your own research here as to how large these 'relative' risks actually are, before this subject comes up with GP, it would be good. It's likely GP has only read 'headlines' and the detail tells a less 'risky' story )

It is true that having a TSH as low as you have will actually be reducing the conversion of T4 to T3.

So that leaves you with GP demanding reduction of Levo to reduce risk's and presumably , you not wanting to as you didn't feel ok on lower dose.

Which may give you some leverage to get a referral, if you just refuse to accept a dose reduction. GP will not want to take responsibility for leaving you with a TSH of 0.01. He might be glad to pass you on up the line.

[Fluffysheep in reply to tattybogle]

Thanks. I wondered about conversion previously, but seeing as both my T4 and T3 results have gone up quite a lot from last time, I'm assuming this isn't actually a problem?

My GP isn't happy about my TSH, but she seems (having sought some advice) happy to leave me on my current dose of 150mcg of levo for now. I didn't feel better on a lower dose, and there doesn't seem much change now either tbh.

I think that my GP might think I'm taking T3 medication (which I'm not, although I do have a stash I bought in case it was needed). I was phoned yesterday by the admin staff to give me my blood results, and the comment the GP had put was that "I would need to make a decision on whether to carry on taking any medication I was buying". I believe this is because early on I asked whether she would be prepared to do a private prescription for T3 if required, and she said it wasn't allowed. I thought it was an interesting comment for her to make though.

[tattybogle in reply to Fluffysheep]

Yes, interesting comment. I agree, she is 'fishing' for confirmation, or already thinks you are adding T3.

I suppose it is at least encouraging that whoever she asked for advice, didn't immediately freak out about low TSH. Not that that help's you with 'what now ?'

they are probably 'letting you get away with it' because your FT4/FT3 are still just in range.

The conversion thing is to do with TSH driving DIOdinase conversion from T4to T3, but in your case ,Yes ,it seems you are doing ok on the conversion front regardless.

which is still no help to you if you still feel rubbish.

Look on the bright side though, you now know that a proper dose of Levo, with FT4/FT3 balanced high in range hasn't yet restored health,( and adequate thyroid hormone replacement is supposed to restore health !).

Some folk get stopped from even trying Levo properly because of fears of low TSH.

It's good the GP will allow you to continue , so use the time to optimise all the vitamin/mineral/ diet things suggested here, and see if that helps.

If it doesn't , then you can say you have tried everything possible to get well on Levo only, (including trying it for long enough) But.... " i still don't function , and i'm not interested in looking for other causes of my symptoms until we have tried all potential forms of thyroid replacement "

Latest NHS guidelines do state (in the small print!) that they accept that about 15% ish of patients do not do well on Levo alone, and T3 trials ARE allowed.

I can't see any consistent 'science' argument that is getting people on an NHS trial,so i reckon a lot of it is a mixture of luck, postcode, and a fair amount of 'how pig headed you can be'.

[Fluffysheep in reply to tattybogle]

Thank you, your reply is really useful. I've got a telephone appointment with the Dr next week, so I'll try and convince her that I really do still need the endo referral (not locally, they were rubbish and I'm actually amazed they said the Dr could keep me on the dose I'm on an not reduce it). I will also make sure I clarify with her that I am taking any other thyroid medication other than what she prescribes, as I don't want her to be in any doubt of that. My vitamin D and B12 are in a good place (I am supplementing those) so it just my ferritin I need to get sorted.

[fibrolinda]

My ferritin was just in range and it took several months but I did get it to just under 100 by taking ferrous fumerate, 210mg 3 times a day. Then reduced to two a day then one. Eventually had to switch to 14mg 4 times a week as went a bit high in range, maintain now on 14mg four times a week. Vegetarian too. Did regular iron status checks too not just ferritin.

[Fluffysheep in reply to fibrolinda]

Did these tablets increase all your other iron levels, or just your ferritin? I'm keen to increase my ferritin, but not my other levels out of the top of the range in doing so, as I understand that can also be bad.

[fibrolinda in reply to Fluffysheep]

At one point my ferritin went too high and iron status test showed all too high which is when I reduced to 2 tablets then 1 tablet a day (210mg) . All levels then dropped to a good place then started to go up again so switched to 14mg a day which slowed but didn't stop increase... Four times a week keep everything nice and steady. It was almost as if I had a blockage and needed high doses to clear it then dose needed plummeted! Your iron levels being high in range just ferritin low complicate it... Hmmm, nothing is ever simple 😕 Sorry I cannot help. Maybe do new post about low ferritin but high in range iron status levels. I know someone is very knowledgeable on this but darned if I can pull who from my foggy brain😒

[Fluffysheep in reply to fibrolinda]

Can definitely relate to the foggy brain, mine is as foggy as they come!

[fibrolinda]

Fun isn't it 😶