Terrible fatigue and brain fog

[Glutenfreebabe]

for the past four weeks on and off I’ve felt plagued by extreme fatigue and Brain fog. I haven’t had blood test since last nov and I wondering if it’s my thyroid I’m currently on 150mg of Levothyroxine I’ve upped it from 125mg. The initial increase helped but I’ve plagued and I’m starting to feel bad again. I feel very debilitated by this. Any ideas?

[Jaydee1507 Administrator]

Welcome to the group.

Do you have a copy of your latest blood results? Ask GP receptionist for a printed copy which you are legally entitled to.

Have you recently had key vitamins tested - ferritin, folate, B12 & D3? When hypo we get low stomach acid and cannot absorb vitamins well. This causes symptoms on their own but also mean Levo cannot work properly.

[Glutenfreebabe in reply to Jaydee1507]

thank you i will ask , good to know about stomach acid

[SlowDragon Administrator]

Welcome to the forum

What were your most recent results on 125mcg levothyroxine

ALWAYS test thyroid levels early morning, ideally just before 9am, just water between waking up and test. Last dose levothyroxine 24 hours before test

Do you always get same brand levothyroxine at each prescription

Is 50mcg tablet same brand as 25mcg were

If Ft4 levels are too high after dose increase this can cause symptoms

What vitamin supplements are you currently taking

Presumably you are on gluten free diet

Are you also on dairy free diet

[Glutenfreebabe in reply to SlowDragon]

yes gluten , dairy free. I take b12 , magnesium, glucosamine, L Tyrosine, selenium, zinc, vit d and K2, ginkgo Bilboa. I have just ordered Mucuna . I’ve never seen my results . After a month of trying to speak to a gp and get bloods tested I’ve finally got an appointment in three weeks.

I have three good hours when I wake up then it’s downhill from there .

[SlowDragon Administrator in reply to Glutenfreebabe]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

[Glutenfreebabe in reply to SlowDragon]

thank you this is very helpful. I will go online and ask at GP's if not successful.

[Catseyes235 in reply to Glutenfreebabe]

if you can sign up to Patientaccess or one of the many sites, or through NHS site, you canmake appointments and order meds on, and you should be able to get your results too.

[PurpleNails Administrator]

Welcome to forum

Had you tested your levels before increasing? 

 How long have you been on replacement?

Have you always made adjustments slowly? 

What are your currents results?

For full results you need TSH, FT4 & FT3.  Important to test folate, ferritin, B12 & vitamin D.  Have you had antibodies tested? TPO & TG antibodies, these are often tested once when diagnosed. 

Recommend on this forum that thyroid test are book for early morning, fast overnight (lots of water) leave off any supplements containing biotin for 3 day prior. Delay replacement dose until after draw.   This gives consistent testing. 

[Glutenfreebabe in reply to PurpleNails]

Thankyou no not a gradual increase as I don’t have small enough tablets . I will ask for all these to be tested . Thankyou very helpful

[PurpleNails Administrator in reply to Glutenfreebabe]

On average a starter dose is 50mcg then adjustments by 25mcg a day.  

Testing after 6-8 weeks on unchanged dose. 

Most tolerate this level, some can tolerate larger increases but changing faster will create issues (TSH responds slowly, needs time to catch-up).

some are especially sensitive to changes and need to increase more gradually & slower. Eg cutting 25mcg in half & leaving dose changes to every 10-12 weeks.  

[Glutenfreebabe in reply to PurpleNails]

thank you Purple Nails

[makemepainfree]

I have had the same symptoms I also on 150 thyroxine but gp is blaming it on labyrinthitis i do have Lot of problems with my ears i do have alot of of other health problems so I don't know what is making me want to sleep so much.

[rosie61 in reply to makemepainfree]

Check the brand of levothyroxine you are on. When I was changed to Teva brand , I felt really ill. It felt like the thyroxine and my B12 injections were not working. I researched on here and found that some others had problems with Teva. When I was changed to a different brand I recovered quickly. Then a couple of prescriptions later I was ill again and realised that I was taking Teva in a different branded box! The Drs have put no Teva on my prescription so the chemist changed them for me. Now I always check what is in the box before I leave the chemist.I also had similar problems when thyroxine was fine but I wasn't absorbing b12. I am now on injections every 12 weeks. Drs no longer check for b12 deficiency on routine blood tests. Which is so wrong when you read up on all the problems this illness can cause.

Hope you find out what is causing your problems soon.

[Glutenfreebabe in reply to rosie61]

Thankyou I’ll look into it it’s annoying how they change brands

[tinkerbell22]

Is it just since the increase from 125mcg to 150mcg levothyroxine that you feel bad?

[Glutenfreebabe in reply to tinkerbell22]

No i increased as i felt bad and it helped for a week then i went back down

[Santolina]

Since I added Metavive 1 to my levothyroxine tablet, it's made a huge difference. And given that iodine is the missing ingredient in all thyroid disfunction, I've also begun using two drops of Lugol's 15% iodine in one pint of water, drunk throughout the morning. Simple solutions to a decades old problem.

[Glutenfreebabe in reply to Santolina]

Hi Santolina. Thanks for the reply . May i ask how long have you been taking these?

[Santolina in reply to Glutenfreebabe]

I've been taking the Metavive 1 for six months; since watching Dr Myhill's podcast on 'being hypothyroid', I now take one Metavive under the tongue when waking along with the levothyroxine and then another Metavive midday, again under the tongue until it dissolves.

Re the Lugol's iodine, I also take lots of vitamin C during the day which should not be taken with the iodine. So now I take three drops of iodine in a small glass of water after I brush my teeth before bed. This I've only been doing for a few weeks.

I see the difference in my hair & nails. Decades of trying to decipher lab results which ultimately are based on dodgy statistics drove me mad as much is pseudo-science adopted by a group think bunch of doctors.

[Glutenfreebabe in reply to Santolina]

Hi Santolina

I've read both those treatments can be toxic if you have a thyroid problem.?

[Santolina in reply to Glutenfreebabe]

That's shocking & absolutely incorrect. I suggest you watch the podcast by Dr Sarah Myhill. There are some in the medical profession who feel threatened by a doctor who challenges them and if you've been following the hypothyroid saga for decades as I have, my issues began in Sheffield with the head of endocrinology, Prof Weetman. He initially suggested I [and dozens of other women] needed prozac and then he'd do some more tests - a monstrous assumption. Mis-diagnosis with those who are hypothyroid has been going on for far too long and this is the first time in years, I've felt more like the me that I knew was there. Weetman was ultimately brought to book by Thyroid UK - lots of women gave testimony to his barbaric diagnosis.

[tattybogle in reply to Santolina]

Santolina . you should do plenty of research about iodine use .

The T4 in Levothyroxine is composed of iodine (T4 = 4 iodine atoms )

metavive will also contain iodine because any T4 in metavive also contains 4 iodine atoms and any T3 contains 3 iodine atoms.

thee main use of iodine in the body is by the thyroid gland~ i uses it to to make T4 and T3.... but since you are now taking thyroid hormone replacement , your thyroid needs much less iodine than a person who doesn't take thyroid hormone replacement because it is now not making much/ any T4 and T3.

Both these facts mean a person taking levo needs less iodine than someone who is not .

Iodine has complex and seemingly contradictory effects on thyroid function .. it can worsen hypothyroidism ~ in high doses it was used as an antithyroid drug to treat hypERthyroidism (before carbimazole came into regular use).

But it can also trigger/ worsen HypERhthyodism .

there is lots of knowledge about iodine and its complexities /interactions with selenium etc on the forum .

Perhaps write a post and ask for information about this subject before deciding whether you wish to continue supplementing with Lugols Iodne .

Because of these factors, Iodine should not be supplemented by thyroid patients unless they have tested correctly ( not the 'patch test' it's unreliable) and know themselves to be deficient in iodine .. and due the complexities ,if it is supplemented it should really be done under the guidance of an experienced practitioner .

[Santolina in reply to tattybogle]

useful comments but it would be good to know these aren't just anecdotal, that you've got links/references to validate? Also, there's little mention of the instability of generics which has been a huge problem within Europe. Regulation of over-the-counter pharmaceuticals hasn't been as consistent and, as a result, lawsuits have been brought against some. Tracking mine over a period of three years showed that taking the same dosage, the same manufacturer, I was practically on my knees. Teva/Mercury in the UK have been a nightmare.

I'm using the new book by Dr Sarah Myhill in which she references all her comments via the peer review/medical journal/research process.

Everyone on this site knows that the problems aren't being solved by the medics but by us on this site, advocating our own health care.

[tattybogle in reply to Santolina]

thyroiduk.org/11-great-ques... thyroiduk.org/11-great-questions-about-iodine-answered/

helvella.blogspot.com/p/hel... -iodine-patch-test.

dropbox.com/s/vp5ct1cwc03bl... go to .."Iodine Content of thyroid Hormones"

btf-thyroid.org/iodine-and-... btf-thyroid.org/iodine-and-thyroid

lugols used before surgery to shrink thyroid in hyperthyroidism: healthunlocked.com/thyroidu... waiting-for-surgery. healthunlocked.com/thyroidu... an-overactive-thyroid.

healthunlocked.com/thyroidu... iodine-is-not-the-bad-guy?responses

healthunlocked.com/thyroidu... the-iodine-question

healthunlocked.com/thyroidu... trace-element-needs-for-thyroid-function

healthunlocked.com/thyroidu... iodine-ideal-range

healthunlocked.com/thyroidu... sky-high-iodine-result

healthunlocked.com/thyroidu... thoughts-advice-on-plant-milks-containing-iodine-please?

Hashimoto's patients may do better on low iodine diet:

drruscio.com/hashimotos-thy... see "Low Iodine Diet "

thyroidpharmacist.com/artic... iodine-hashimotos/

Excessive iodine has been connected to the development of Hashimotos:

frontiersin.org/articles/10...

Front. Endocrinol., 20 November 2019 Sec. Thyroid Endocrinology

Volume 10 - 2019 | doi.org/10.3389/fendo.2019....

"Excessive Iodine Promotes Pyroptosis of Thyroid Follicular Epithelial Cells in Hashimoto's Thyroiditis Through the ROS-NF-κB-NLRP3 Pathway" ~ links Hashimotos with too much iodine “in vitro”.

[Santolina in reply to tattybogle]

you've been busy! thanks very much.

[tattybogle in reply to Santolina]

the iodine bit in Sarah Myhills book was mentioned the other day ...see replies from radd & guineapiggy the end of this post : healthunlocked.com/thyroidu...

[Santolina in reply to tattybogle]

I've got a major hiccup here & think it's my storage problem; I'm trying to find the iodine paper from a Japanese university which of course, details iodine specifically vis a vis the Japanese diet. I think this is one of the paper's Dr Myhill used in collating the medical anthropology of why so many of us in the west, have thyroid problems compared to the Japanese women. Our toxic environment - pesticides etc - play a huge role along with the food we eat - causing many to be perpetually ill. But the thyroid is the engine, so she says, which is why when this is out of sync, like dominoes,the rest ultimately hiccups as well. SORRY, my machine is telling me I've got a battery problem. I'll look at your links as soon as I get this fixed.

[Shaz2302]

Make sure to have your adrenals checked for adrenal fatigue (24-hour saliva test of cortisole and DHEA). The thyroid, adrenals, and sexual hormones all belong to the endocrine system. If one of those factors is out of balance, then after a while the others will be affected, too. Especially when taking levothyroxine for a while which only contains t4, it can become necessary to also treat your adrenals because of adrenal fatigue. Some people switch to a t3-only therapy for some time (in order to get rid of high RT3 (reverse T3), or to a combi-therapy with t4 and t3, others then switch to natural desiccated thyroid hormones (NDT) in order to deal with this issue, because NDT contains all necessary thyroid hormones (t1, t2, t3, t4, calcitonin). By the way, when you have your adrenals checked, make sure to not take the following supplements and/or medications before the test (for a list, check stopthethyroidmadness.com/s..., because it can affect the lab results. I can strongly recommend the book "Stop the Thyroid Madness" by Janie Bowthorpe for further info on all those issues.

[Glutenfreebabe in reply to Shaz2302]

thanks Shaz 2302. Do i ask the GP for this? I finally got a telephone appointment after six weeks then to be told i have to wait another five weeks on a stable dose before my bloods can be tested.