Consultation with doctor Low Ferritin and low TSH,... WE DID NOT AGREE!

[imsotiredallthetime]

I'm going to buy the blood test below through Thriva after just having the worst consultation in the world with my doctor about my low TSH 0.16 ( 0.38-5.5)and low Ferritin levels 8 (10-322)

She wanted to lower my thyroxine further to higher my TSH and I wanted to wait another 4-6 weeks as I had only been on iron 2 weeks when the test was done to see if when my levels returned to normal so did my TSH. I was trying to explain the relationship between the 2 and she didn't agree and said I was making it up based on a few tests that I had in the past that highlighted my theory and that it wasn't true!

She didn't agree that I needed a new full iron panel or a full thyroid panel (apparently the labs choose the test to do not doctors!) .. After my iron prescription ended, Vitamin tests were totally out of question and I had had a 20 minute consultation that was more than my alloted quota! "

The result TSH check and ferritin check Only! at the end of December so another 6 weeks on iron.

I only wanted to have my TSH compared to normal Ferritin. The last time this happened they lowered my dose of thyroxine put me on iron 3 months later took me off iron and put me back on the dose of thyroxine I had previously been on!

Each time Im ILL with low iron, lower dose of thyroxine ILL, higher THYROXINE ILL, Ferritin Lowers again ILL. Just trying to save myself.

She said I have to up and lower my dose it's not 1 dose 1 tablet for my whole life.. I said I know but if I have no hyperthyroidism symptoms why can't she give me 6 weeks to see where we are. I was on 125mg for 18 months no symptoms at all and all she's basing this on is my TSH... If she hadn't of checked my ferritin levels on my iron I told her everything would appear normal there too.

Now on 125 one day And 100 alternative days!

I only went to have my iron tested because my hair was falling out and I couldn't sleep! What do you guys think? Did I do the right thing... She wasn't happy with me at all and Im now doubting myself!

9th November 2020 Thyroid Panel

Range for T4. 16.3 (10.0 - 18.7)

Range for T3. 4.9 (3.5 - 6.5)

TSH 0.16 (0.38-5.5)

13th October 2020 Iron Panel

Ferritin 8 (10-322)

TIBC 88 (45-81)

Serum Iron 19 (9-30)

Transferrin Saturation 22% (15-50)

Transferrin iron 3.5 (2.5-3.8)

I'm not opposed to lowering my dose I wish I didn't have to take it... but a "normal" playing would be a good place to start before I start messing around with it again especially with the fact this has happened twice before.

Anyway... How long should I wait do you think to have the Thriva tests below and what's the ritual before testing please. BTW I take my thyroxine in an evening and all my vitamins in a morning. Thanks

[SlowDragon Administrator]

Absolutely essential to regularly retest vitamin D, folate and B12 too

What vitamin supplements are you currently taking

Ferritin is absolutely dire

SeasideSusie or humanbean msy comment

Never supplement iron without doing full iron panel test for anaemia first

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/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.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

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

healthunlocked.com/thyroidu...

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Do you have Hashimoto’s

Are you on strictly gluten free diet

[imsotiredallthetime in reply to SlowDragon]

How long should I be off vitamins before blood draw?

[Nanaedake]

If it were me, I would definitely refuse to reduce levothyroxine dose until FT4 and FT3 were tested alongside TSH.

[imsotiredallthetime in reply to Nanaedake]

They were this time but she said they won't do it next time...

Range for T4. 16.3 (10.0 - 18.7)

Range for T3. 4.9 (3.5 - 6.5)

TSH 0.16 (0.38-5.5)

The issue for me is I don't think my thyroid is the problem here I think its my iron. When my ferritin iron normalises (28 let's say for now.. but I do want it higher!) if my TSH hasn't gone up I will lower my dose but I'm not prepared at the minute to lower my dose purely based on TSH because I've noticed when my iron goes up so does my TSH... and vice versa.

[Nanaedake in reply to imsotiredallthetime]

Point out that your FT4 is in range and FT3 is comfortably in range so there's no risk of being overmedicated and no need to reduce dose. You don't need to bring the iron discussion into it. Iron quite likely does affect TSH but the doctors won't know that. Your symptoms are most likely due to low iron and vitamins not your thyroid meds or your TSH level.

[imsotiredallthetime in reply to Nanaedake]

100% agree. Its the first time I've really contributed to the conversation when visiting/talking with the doctor I did not anticipate that me having knowlege of my condition and the way I feel would be such an obstacle in treating me. It was like I couldn't have it because I asked for and It was wrong just because I said it. Thank you for your reply I'm not so upset about it now but I was literally fit to burst a few hours ago!

[Nanaedake in reply to imsotiredallthetime]

The trouble is that if you reduce levothyroxine your FT3 level is very likely to drop. FT3 is the active hormone that our cells need. When this is reduced then it can affect gut function and reduce acidity. That in turn makes it more difficult to extract and absorb nutrients from food. That, in turn, could reduce iron levels.

[Jazzw in reply to imsotiredallthetime]

It’s the reason I do everything I can not to visit my GP these days. I’m apparently not supposed to read up on my own condition, know what I’m talking about, have an opinion, dare to disagree. And yet I have the equivalent of 3 degrees, one of them in nursing, so, you know, not exactly someone who can’t wrap my head around stuff.

On the rare occasion I have to visit the doctor, you’ll generally find me weeping in my car afterwords from sheer frustration.

[SlowDragon Administrator in reply to imsotiredallthetime]

Ft4 is 72% through range

Ft3 only 46.6% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Improving low vitamin levels should improve conversion and often raises TSH (as Ft4 drops slightly)

[Batty1 in reply to imsotiredallthetime]

Your not hyper based on your labs! But your iron is so low do you get breathless at all? Im confused why she’s testing your iron after 2 weeks (I'm on iron) and my doc says I need to be on it for a few months before she test because it takes this long to build up and I'm no where as low as you are!

[imsotiredallthetime in reply to Batty1]

Yes I am breathless very very actually...My red blood cells are also very small at 12 width Just within the normal range.

The blood test for my thyroid was done in response to lowering my dose in September as my TSH was low so they retested in November. I requested an iron panel in October because doctors were blaming my thyroid for my symptoms and I was adamant it was my iron(previous experience with this!) Iron was done and ferritin extremely low. Iron prescribed and November's test for thyroid (2 weeks after starting iron. Showed exactly same results with low TSH, T4 and T3 with norm range! (as above) again they wanted to lower my dose so I refused and asked for a 6 week check of thyroid and iron together saying my iron needs time to work. They don't agree the 2 are related. Unlike me!

Regardless of whether they are related or not though what has been kindly pointed out to me is that my thyroid results do not show me being as hyperthyroid anyway, I have none of the symptoms they are only saying that because of my TSH.

My symptoms are classic iron related or hypothyroid so lowering my dose of thyroxine I feel isn't going to do me any favours what so ever.

Hopefully this next few weeks will allow my iron to rise along with my TSH and symptoms to resolve...

I've ordered my Thriva test which should arrive next week, I've stopped taking my vitamins (not iron as its to low! But I will stop 2 days before I do the test)

This test will be 1 month after my last thyroid panel and about 7 weeks since I started with iron. Will also include B9, B12, Vitamin D.

Then I will have another 4 weeks before the doctors do there tests TSH and Ferritin so I can see what improvements I am getting.

[SlowDragon Administrator]

I take iron 3 x 200 as my ferritan levels are at 8 (range 22-322)****

Vitamin D high dose

B12 1200 dose

Vitamin C high dose

When were vitamin D, B12 and folate last tested

How much vitamin D?

How long have you been on 3 x ferrous fumerate?

Are you eating iron rich foods as well

[imsotiredallthetime in reply to SlowDragon]

How do i find my old posts I was looking to copy and paste those and couldn't get it.......Never tested vitamins but have been on them 2 yrs and know I felt better for it. Which is why now I definetly know it needs doing and I will keep on top of them.

I've been on iron ferrous sulphate 200mg x 3 since 13 Oct 20. So 5 week!

But had only been on it 2/3 week when thyroid test was done.

Maybe not worth doing the thyroid and iron panel just yet!!

Should I just do the vitamins now?

[SlowDragon Administrator in reply to imsotiredallthetime]

SeasideSusie or humanbean may pop along and advise how often to test full iron panel when supplementing iron

Link about low ferritin, high haemoglobin

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

Vitamin D, folate, B12 need testing at least annually

Ideally vitamin D twice a year when supplementing

[SlowDragon Administrator in reply to imsotiredallthetime]

Vitamin D

NHS test - £29

monitormyhealth.org.uk/vita...

vitamindtest.org.uk

[Wired123]

Have you got your heamoglobin levels? Worth checking. ferritin is the store, haemoglobin is the fire. Your ferritin is too low at 8 and should be topped up anyway.

Also worth looking up thallesemia as some people have this which means the reference ranges don’t apply to you as your body will not take on a higher level of iron no matter what you try.

[imsotiredallthetime in reply to Wired123]

Ooh interesting about haemoglobinIn October same time as my iron was tested it was done... Never really looked I was more bothered about my iron... It wasn't raised as an issue but here they are....

Haemoglobin Concentration 125g/L (119-149.0)

Mean cell Haemoglobin level 27.4 pg (27-32.5)

Mean cell Heamoglobin concentration

33.2 g/dL (31.6-36.5)

Mean Cell volume 82.7fL (82.0-100.0)

Hope these are right they changed the word cell to "corpuscular" threw me for a minute! Lol

White cell count 9.2 (3.7-10)

Red cell count 4.54 (3.85-4.9)

Platelet count 387 (150-450)

Thank you for trying to help me xx

[Wired123]

It’s ok, just about within range. Very easy for a doc to class you as “normal” but you have symptoms so you can push for further investigation by a haematologist or you can go to see one privately.

You could try eaten iron rich food for a month or so and see if that helps recover levels of iron.

[humanbean]

13th October 2020 Iron Panel

Ferritin 8 (10-322) --- Deficient

TIBC 88 (45-81) --- Over the range

Serum Iron 19 (9-30) --- 47.62% of the way through the range

Transferrin Saturation 22% (15-50) - Much too low

Transferrin iron 3.5 (2.5-3.8)

You can see optimal results for iron on this link :

rt3-adrenals.org/Iron_test_...

Although it isn't mentioned specifically on that link, people have found with experimentation that ferritin should be at mid-range or a bit higher for best health. Low ferritin can lead to hair loss, fatigue, cramp, muscle pain, chest pain, restless legs, breathlessness, and no doubt a few other conditions too.

Ferritin - Optimal is going to be around 160 - 220 (approximately).

TIBC - Low levels indicate little ability to absorb iron, high levels indicate your blood could suck up masses of iron given the chance. Your TIBC is indicating you need a lot of iron.

Serum Iron - Given the other results you've got your serum iron is surprisingly good. I suspect this might be because you've been taking iron tablets. I don't know whether you know this, but to get the most accurate results for iron and other iron-related tests people should stop their iron tablets for a week before testing. Optimal for iron is about 55% - 70% of the way through the range i.e. 20.55 - 23.7.

Transferrin saturation - Optimal is 35% - 45%. Yours is far too low, and shows that you need more iron.

If people's bodies can deal with iron properly (not everyone can) then iron should move freely from serum iron into ferritin and back again as necessary. So the fact that your serum iron is surprisingly good isn't a reason to say your iron is fine. Your ferritin, TIBC, and transferrin saturation percentage are all very, very poor.

Some of the problems that can happen with iron are described on this link - please read the replies too :

healthunlocked.com/thyroidu...

One of the things that doctors never really make clear is that people absorb iron quite slowly. Even someone with no chronic disease but who ends up anaemic might take 6 months or more to fill up their ferritin (iron stores). In my own case, my serum iron was below range and my ferritin was scraping along the bottom of the range and it took me 21 months to get my ferritin to mid-range. And I was taking 1 tablet, 3 times a day, of ferrous fumarate 210mg all that time, apart from when I stopped for testing. Some people take longer than me or can never refill their serum iron and ferritin. I found that giving up gluten completely improved my absorption of iron quite dramatically.

The good news is that people can buy prescription-strength iron tablets without a prescription. You just need a pharmacist's permission. So go to a pharmacy and ask, ideally showing a picture of what you want. If you get turned down go to a different pharmacy. (Boots have turned me down once.) I usually buy my iron tablets at a local independent pharmacy or at a Tesco Pharmacy.

For information on various iron supplements, see this reply that I wrote for another member:

healthunlocked.com/thyroidu...

Please make sure you take iron four hours away from any thyroid hormones.

Good luck!

[imsotiredallthetime in reply to humanbean]

Thank you for your reply and the links I have read and will reread them later! It's such a tricky business isn't it. This forum is what honestly keeps me sane and really helps me. Since being on here I've started taking my thyroid at night, added vitamins and tweaked my diet and habits.Thank you for replying that is the most help really.. feeling like no one understands or can help is soul destroying and that's no good for anyone's health.