set backs

[Gemmab1982]

hey I’ve been diagnosed with hypo and hashi June this year, having changed my diet to gf, and occasionally diary small amounts here and there in food, I’m sugar free sort off with the occasional bit of chocolate!! My last two lots of bloods my t4 and Tsh have been going in the right direction, and I was determined and focused, I still have symptoms and my ferritin was on the low side, I had all my thyroid bloods done yesterday, asked for the full iron panel as requested on the form, went for my bloods yesterday which took 4 attempts to get blood from me!! 😩 they said I was dehydrated!!

had my results back today and both my Tsh and t4 have had a set back to the wrong side!! And my ferritin was only tested that’s really low!! Bear in mind I was on my monthly at the time of the test which didn’t help, doctors say it’s all normal!! The doctor wont increase my dose of levo till dispose to my endo even when it says on the lab results from labs that and increase is needed!! 🤷‍♀️🤦🏼‍♀️!!

so now I’ve had a good cry!! Frustrated and with no help form the gp or family and friends I feel like giving up!! But I know I can’t!! So this set back has really hit me!! I need a new plan of action anyone help me??? 🙏🙏

[Jaydee1507 Administrator]

Can you state exact blood results along with reference ranges for each test? Its difficult working from a description.

Have you also had B12, folate & D3 tested? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Working on low vitamin levels can really help how you feel and get your thyroid hormone working well too.

[Gemmab1982 in reply to Jaydee1507]

Hi yes These are the results of yesterdays bloods v last lot of bloods

Labs

[Gemmab1982 in reply to Jaydee1507]

My last thyroid results are

Tsh 2.17mu/L

Normal range is 0.20 to 4.50

T4 9.2pmol/L

Normal range is 7.0 to 17.0

[Gemmab1982 in reply to Jaydee1507]

iron results ferritin 36 ug/L

Normal range is 5 to 85

[Gemmab1982 in reply to Jaydee1507]

Serum B12 = 465ng/L

Normal range 145 to 910

Serum folate 17.2

Normal range 3.0 to 20.0

Vit d I’ll was tested but labs say duplicated results as my last test was 9 October so that wasn’t done, but at the last test it was 74.5

Normal range is 50.0 to 250.0

[Jaydee1507 Administrator in reply to Gemmab1982]

Can you ask a different GP at the same practice for an increase as your TSH is too high and FT4 too low. I like that the advisory states optimal level is below 2 though.

Why are you seeing an Endocrinologist?

Are you taking any supplements at the moment?

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. wildatlantichealth.com/vita...

Your B12 should be a little higher to be optimal. Suggest you buy a good active/methyl type B complex that will help keep all the B's in balance.

Slightly cheaper options with inactive B6:

amazon.co.uk/Liposomal-Soft...

Contains B6 as P5P an active form:

bigvits.co.uk/thorne-resear...

healf.com/products/basic-b-...

Explanation about the different forms of B6:

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

When you get the results of your iron panel, start a new post for comments on those results. In the mean time, ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc

[Gemmab1982 in reply to Jaydee1507]

Hi I’ve asked them to increase my meds and mentioned NICE guildlines to them see what they come back with, I saw the endo on 11th November and he only had me tested for TSH and said i basically I’m in remission!! he told me all my supplements were a waste of money all I need was vit d, he also told me my antibodies cannot be reduced and can’t do anything about them, he will see me in January!! A complete waste of time!!

Yes I’m taking a lot of supplements at the moment,

Vit b complex, p5p, vit c 1000, super enzymes,

Magnesium glycinate, NAC, selenium sometimes if I’ve not had food rich in that or Brazil nuts, probiota histaminX ,

Clean vit D3 + K2 at 5,700 iu,

better you boost b12 spray twice a day at 1.200ug each,

Inositol in water,

I was taking iron, zinc, copper but stopped that due to not being tested

I asked docs for the full iron panel and all that was tested was ferritin and that was low but docs said it’s normal range!! As always🤦🏼‍♀️

To be fair my vit b12 has been going up a lot with each blood test so that is increasing same with my vit d as well I hope as I’ve gone from 3,000 to 5,700 so that would have gone up but again it wasn’t tested due to having one in October!!

Last month when I found out my ferritin levels were low, I’ve been trying so hard to get my levels up, by eating red meat, eggs, livers, pate all sort every week and it might have gone up but then my monthly could of dropped that down!!or if I’m not absorbing properly I don’t know, I deffo need a supplement to help boost my levels up but I don’t know where I can find that!! Again I’ve asked the doctors why have they not tested the full iron panel when it’s been asked for in the blood forms

[Jaydee1507 Administrator in reply to Gemmab1982]

Doctors get no training in nutrition and have no idea how to make us well.

Keep going with the iron rich foods, it can take any months so be patient.

You could try emailing the Endo's secretary if your GP is refusing you an increase.

[Gemmab1982 in reply to Jaydee1507]

I will do I’ve sent the doctor a message this morning asking for the increase waiting for them to get back to me, I woke up feel nauseous this morning and wonder if this is down to low ferritin? Or hormones? Xx

[Jaydee1507 Administrator in reply to Gemmab1982]

It can be very difficult if impossible to pick out what is causing what when you have multiple low levels of hormones and vitamins.

Your thyroid levels are low and that is known to cause nausea so getting an increase in Levo will really help.

[Gemmab1982 in reply to Jaydee1507]

I pushed for my extra 25mg and now I’m on 100mg I wasn’t going to settle for them waiting for a letter from my endo so I rang up my endo and they told me they haven’t received anything so back onto the doctor asking them to send the info and done got my increase, I’m going to book to have a iron panel done after Christmas now and in the mean time enjoy Christmas and all the lovely gluten n dairy free treats while I can!!

Merry Christmas xxx

[SlowDragon Administrator]

see different GP and INSIST on 25mcg dose increase

you are woefully under medicated

How much levothyroxine are you currently taking and which brand

Approximately how much do you weigh in kilo

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

What vitamin supplements are you taking

Ferritin is borderline deficient

[Gemmab1982 in reply to SlowDragon]

Yes I’m going to push this extra 25mg tomorrow, I’m currently on75 mg, I’m just slightly over 11stone,

Does everyone have set backs like this or is it just me I was doing so well since June and this bloods had set me back completely I’ve been so emotional today and feel I’ve hit a brick wall, 😭,

These are my results since June can u see!!

Normal range for Tsh is 0.20 to 4.50

Normal range for T4 is 7.0 to 17.0

Diagnosis results till now

Dec T4 9.1 TSH 4.05

Oct T4 9.2 TSH 2.17

Aug T4 8.7 TSH 5.81

June T4 6.6 TSH 8.37!

Why has my dec gone down hill? Is it because I’m on my monthly? Or is it because I’m eating dairy nightshades and goitregens??

[SlowDragon Administrator in reply to Gemmab1982]

Well you simply need dose increase

This is typical progress

Dose is increased

Endocrine system slowly adjusts over 2-4-6 months

And dose then needs increasing

Guidelines on dose by weight

11 stone = 70kilo approximately

70 kilo x 1.6mcg = 112mcg as the likely EVENTUAL dose Levo you might be on

Vitamin levels are low BECAUSE you need dose increase in levothyroxine

[Gemmab1982 in reply to SlowDragon]

So it’s safe to say this is a common thing and not just me then? I’m not very bright when it come to understanding these things, I feel very lonely at times due to not having support from friends and family I’m on my own trying to figure this out, it’s just really sh**ty that doctors can’t help me with any of it and the endo is no better either!! He was going to sign me off because he said I was in remission off just the Tsh!! 🤦🏼‍♀️ couldn’t be far from it xx

[SlowDragon Administrator]

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

[Gemmab1982 in reply to SlowDragon]

Every increase has been 25mg every 7-8weeks after bloods

[SlowDragon Administrator in reply to Gemmab1982]

Simply ready for next increase

You have nice responsive TSH

Just a useless GP if they won’t increase now when results clearly show you need it

[Gemmab1982 in reply to SlowDragon]

Does this mean I’m converting well to my meds I’ve been on the same brand meds since day one!! And continue to, I’m going to start taking my iron supplements but what is the best dose and which type is good for me?

[SlowDragon Administrator in reply to Gemmab1982]

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

Request GP test full iron panel now

retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Look at increasing iron rich foods in diet

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-...

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...

Posts discussing Three Arrows as very effective supplement

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

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...

Chicken livers if iron is good, but ferritin low

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...

Ferritin range on Medichecks

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[Charlie-Farley]

Hi Gem

Sending hugs (sorry they are virtual) 🤗. Everything SlowDragon says. Lots of advice and very good. The forum got me well and I received SlowDragon ’s info links too when I landed here. Just work through a bit at a time- And give yourself some credit- this is a new subject for you and you are doing well. It’s just confusing when you have a doctor that doesn’t know what they are doing. We are bought up to respect and defer. It feels weird to challenge.