Bit lost …wondering where I’m heading …

[Starseed56]

Hi forum friends

I went to my gp Friday to see what help I might get re my thyroid now and also if I might see a haematologist re high serum iron but low ferritin (28 …5-204) thus can’t take three arrows.

I didnt get many answers as he concentrated on a current kidney/uti issue I have so he’s booked me another face to face 30/1 to focus on thyroid. He asked why I’d seen an alternative doctor and not an endo and I agreed was probably a mistake but she’d been recommended, and at least she was the Erfa pathway. He’s happy to refer me to a private or nhs endo and I thought I’d give it a try preferably nhs first see how I get on. And I now have the thyroid UK list. I explained I’m having palpitations and lots of breathlessness which had worsened over the years. My recent ECG was normal. I do also have a family history of heart issues on both sides so was probably good to get it checked as am 67. Guess the reason I’m still looking what to do, is after five months nearly on ERFA I don’t really feel much better. And hard to know is my thyroid actually doing ok but it’s my bloods that are making me so tired. I’ve yet to test for latest increase which I’ll do in a months time. I’m advised by doctor to head for 5 for T3 and 15 for T4 as a good balance, so I’m not there yet!

My ferritin was 27 in 2022 and 28 in 2023. After I’d been eating beef for a whole year. GP was dismissive of blood tests for ferritin says it can go up or down for many reasons. 🤷‍♀️. Didn’t think it important in my profile tho I said it’s one of the four important factors for good thyroid function as I’ve learned here! Led me to wonder why test it if that’s the case?! I was veggie for nearly 40 years, can’t stand thought of chicken liver I’m afraid. What do you make of his comment and what else could I eat that may raise ferritin?

I’ve gone back to juicing daily to try and get goodness right into my cells which may help my very low energy.

I am now taking 120mg of Erfa a day split in two doses one usually in night and one at some point away from meals in the day. I seem to be assimilating this rise ok, tho I’m doing very little in the day at the moment, soon as I do a bit more I get knocked back with tiredness. It’s impossible to have a normal life with energy so low.

I guess if I got to see a good endo I won’t be lucky enough to get Erfa prescribed so may have to revert to Levo and some T3 not sure how that change might affect me as switching over to Erfa was tortuous in the beginning til I got to a reasonable dose level. Has anyone on here switched from NDT to T3 and T4? I may be jumping the gun but am keen for opinions and experiences before I get an appointment!

Erfa costs me about £70 a month not easy on a pension but I’ll keep going if no alternatives. At least I can now get direct from Roseway without the private doctor, again learned here, thanks!

Thanks for reading this sorry it’s a bit long! 💜

[SlowDragon Administrator]

what else could I eat that may raise ferritin?

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

What’s your most recent B12, folate and vitamin D levels

[Starseed56 in reply to SlowDragon]

thanks SlowDragon plenty of info to read thru much appreciated that you’ve pulled it together for me.

I’m hoping the daily juicing will help provide more vitamin C.

Last B12 was 469 (189-883)

Vit D was 200 I was probably over supplementing!

Serum folate was 8.4 (3.10-20)

Above tests done September 23 and ferritin (28) was done October 23 via nhs.

Thyroid levels are still altering due to change of dose, last test in December prior to latest increase was Medichecks

TSH 0.092 (0.27-4.2)

T3. 3.8. (3.1-6.8)

T4. 13.7 (12.22)

Private doctor said aim for 5 and 15 .

Since taking ERFA my T4 dropped from 17 and my T3 raised from 3.3

All much appreciated 💜

[SlowDragon Administrator in reply to Starseed56]

So yes vitamin D too high

Reduce dose a bit

B12 too low and folate

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

healthline.com/nutrition/fo...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[DizzyD]

Hi Starseed, have you ever considered getting a full thyroid function from Medichecks? In my opinion these tests are far superior to NHS thyroid tests because Medichecks test TSH, T4 and T3 levels along with folate, ferratin, D3 and much more. NHS only test TSH and T4....incomplete test really with no T3 numbers you are not getting full picture of your thyroid function.Personally, I have no faith in NHS endocrinologists simply because they do not do a full thyroid function test that includes T3. I have an appointment with NHS endo next week and I intend to present her with my recent Medichecks thyroid test result and request that these results be added to my casenotes.

I do a combo dose of levothyroxine and Efra which works ok for me but it's difficult to get supply of EFRA now...but still there are other NDT options available. I am reluctant to switch over to just NDT because I have AFib and do not want my T3 level to get to top of range.

I am 72. Hope this helps. Take care lovely.

[Starseed56 in reply to DizzyD]

Hello DizzyD thanks for your lovely reply. I already use Medichecks and use them quite regularly whilst trying to stabilise the ERFA to the correct dose. And yes they’re a good measure. Interesting you use Levo and Erfa, is there a reason for that, is there not enough T4 for you in ERFA or is it that you’re trying not to over raise your T3? Am wondering if I have AFib as my mum does and am unsure whether palpitations are due to heart, Erfa or blood!! What a nightmare eh?! I get mine from Roseway labs, never a supply issue these last few months.

Thanks again as I continue to cross the minefield! 💜

[DizzyD in reply to Starseed56]

Hey lovely try and rise above the minefield. I don't have a thyroid so I'm solely depended on thyroid meds. Back in 2020 I switched from levo and started a trial of NDT. Can't recall how many grains of NDT I got up to but I do know I had my first AFib attack and I ended up being taken by ambulance to hospital and diagnosed with afib. I suspect T3 in NDT triggered the afib but I could be wrong. Too much for my t3 deficient body to contend with hence AFib reaction. Knew I have a conversion problem (t4 not converting to t3) taking just levo so I decided to add a small amount of NDT strictly for the t3 content. Everyone is different but palpitations are coming from your heart telling you something is not right. Listen to your body.

So pleased you get Medichecks tests. Have you done any research to check if your blood issue can cause palpitations?

[Starseed56 in reply to DizzyD]

Hi again DizzyD

I am listening to my body absolutely which is why I am speaking to the GP re palpitations and breathing problems (breathing long standing but getting steadily worse) Palpitations definitely worse since i began the NDT! BUT they could also be caused by low ferritin - i dont think my GP knows too much about ferritin and the role it has with thyroid health, see my original post today. So i need to try and ascertain whats the root cause, absolutely, and maybe its both things, a double whammy! I can for example some days just climb my cottage stairs and it sets my heart racing, and my resting rate is about 60. I think i need to get an endo referral step 1, and maybe ask the endo for a haematology referral if the GP won't do it for me. Ive not engaged with the NHS for years really, specially since COVID (dont get me started on the disappearance of our nhs…) but am re-engaging to try and get some positive help, can but try!!

Thank you 🙏 💜

[humanbean]

I went to my gp Friday to see what help I might get re my thyroid now and also if I might see a haematologist re high serum iron but low ferritin (28 …5-204) thus can’t take three arrows.

There are a few possibilities for this presentation of results.

I explained I’m having palpitations and lots of breathlessness which had worsened over the years.

These could be explained by your low ferritin.

.

See this link :

stopthethyroidmadness.com/h...

I can make some suggestions that might help with reason one on that link. It says on that link that you would need to get testing to confirm whether you have an MTHFR problem. But that is a waste of money in my opinion. There are several "treatments" suggested for an MTHFR problem but the simplest and cheapest treatment is perfectly fine for anyone to take whether they have an MTHFR problem or not - because the treatment is usually just vitamins, but they have to be in the right form which can be bought on many websites selling supplements.

Please read this reply to another member - the post is old but still valid :

healthunlocked.com/thyroidu...

If you have recent results for your folate and vitamin B12 it would be helpful to see them with the reference ranges.

.

I mentioned above that I could make suggestions for high iron reason number one. I doubt that high iron reason two would apply to you. Haemochromatosis tends to start showing signs much earlier in adulthood. Some people with haemochromatosis have had ferritin levels in excess of 2000 or 3000 when their problem is first discovered.

According to the stopthethyroidmadness link I gave above :

So the other clue is if ALL THREE of the following are high: serum iron, % saturation and ferritin.

And this doesn't obviously apply to you with your ferritin levels. Have you ever had saturation tested as part of an iron panel? If yes, what was it (including its range).

[Starseed56 in reply to humanbean]

hi humanbean

Thanks for your reply this is take 2 i lost my first response ..

Have you ever had saturation tested as part of an iron panel? If yes, what was it (including its range).

Yes in September 23 my transferrin saturation test was 40% (ranges less than 20% = iron deficient and more than 60% = iron overload) so i am slap bang in the middle.

I’m having palpitations and lots of breathlessness which had worsened over the years.

I am trying to ascertain whether it is my odd iron readings or the NDT that is causing this, hence my visit to the GP. Maybe it is a combination of the two?

If you have recent results for your folate and vitamin B12 it would be helpful to see them with the reference ranges.

Serum folate is 8.4 (3.10-20) Sept 23

B12 469 (189-883) Sept 23

I had been taking but recently finished a B12 supplement (drops) and a Vit B complex. I will start them again.

Re the stopthethyroidmadness article i do indeed have high serum iron and low ferritin but my TIBC has not been tested. Guessing it is likely i have the MTHFR gene mutation so will restart the B12 and B complex. You're more than likely correct it is reason no 1.

(transferrin saturation is different to TIBC yes? The article refers to TIBC and i dont know that! maybe i should ask GP to test)

I hope Ive answered the questions you posed and thanks for taking the time to answer me. 💜

.