Diagnosed with Hashimoto's and struggling - Thyroid UK

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Diagnosed with Hashimoto's and struggling

TJS50 profile image
16 Replies

Hi everyone I'm new to the group but was just wondering if anyone could give me some advice please. Ive just turned 50.

I’m really struggling. Please see my results below

7th December

Free T4: 10.3pmol/L

Serum TSH level 9.9 mlU/L

5th Jan

Free T4: 10.3pmol/L

Serum TSH level 12.2mlU/L

TPO 2000.0

Diagnosed with Hashimoto’s started Levothyroxine 50mg

Had telephone appointment with endo said happy for my doctor to continue as TSH levels come down didn’t really seem interested.

2 February

Serum TSH 2.67 mlU/L

Started feeling unwell so went back to doctors

10 May TSH 6.17

The hospital would not re test my TPO

Doctor upped my dosage to 75mg

But today I feel crap again should I go back?

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TJS50
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16 Replies
SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after each dose increase

How long since you started on 75mcg

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

75mcg is only one step up from starter dose

Likely to need further increases in levothyroxine over coming months, unless extremely petite

Extremely important to test vitamin D, folate, ferritin and B12

Request these included in thyroid testing

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

TJS50 profile image
TJS50 in reply toSlowDragon

Thank you for coming back to me I started the 75mg 12 May. when I was on 50mg the brand was Almus the 75mg is Teva. I have felt ok but it feel like I have been hit with a bang over the last few days my main problem is being anxious and tired this is not me at all. I've had no get up and go since the new year. The doctor told me to see how I go on the 75mg for 3 months and re book my tests. I'm going to see how I go over the weekend and rebook.

Thank you for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply toTJS50

Teva upsets many people….but if you were ok on Teva initially it’s more likely you simply need next dose increase in levothyroxine

Anxiety is EXTREMELY common hypothyroid symptom. Medics tend to think it’s only a hyperthyroid symptom

With Hashimoto’s we must get regular vitamin testing done. Frequently necessary to supplement continuously to maintain optimal vitamin levels. Always test first before supplementing

Strictly gluten free diet often a revelation….but get coeliac blood tests done BEFORE considering trial on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming coeliac test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

hypothyroidmom.com/how-to-l...

Eliminate Gluten. Even if you don’t have Hashimoto’s. Even if you have “no adverse reactions”. Eliminate gluten. There are no universal rules except this one.

SlowDragon profile image
SlowDragonAdministrator

10th May to now is almost exactly 6 weeks….so you need blood test next week or week after

Return of symptoms is strong indicator you are ready for next dose increase in levothyroxine

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, 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

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...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Guidelines are just that ....guidelines.

Some people need more …..some less

healthunlocked.com/thyroidu...

TJS50 profile image
TJS50 in reply toSlowDragon

Thank you. I will keep you updated.

Denide profile image
Denide

Hi 👋 I would like to help but I am not very knowledgeable about the disease. I started learning since my health went really bad.

I hope you find an answer and recovery soon.

Pinkpeony profile image
Pinkpeony in reply toDenide

I would like to help but would have nothing good to say about Levo which made me ill for years until I found Health Unlocked. Good Luck Pp

Denide profile image
Denide in reply toPinkpeony

Hi there,Do you recommend any better alternative to the Levo?

Pinkpeony profile image
Pinkpeony in reply toDenide

Better for me? I had RAI ( radioactive iodine) as I said before I had the information about anything else. ill on Levo I managed to wheedle some T3 from my Endo who seemed to know a lot less than I did about Thyroid problems. With the help and knowledge from the friends on here I am finally taking NDT and so far no problems. Regards Pp

Denide profile image
Denide in reply toPinkpeony

Cool. I will check this out 🙌🏻 Happy you are better now

eda123 profile image
eda123 in reply toDenide

Hi, it is hard to give you any advice, because we are all so different. Just met a lady who went gluten free and have not looked back since. She is 52 and started having symptoms of menopause, being diagnosed with Hashi, so her health started deteriorate and she got help and advice from Isabella Wentz books. I’ve been on Levo from 1997 and have never been 100%, can’t blame the tablet, just the way I am. All the advice given on Healthunlocked is good, correct, but you have to find your way. Shame the Dr’s are not taking us seriously :(, and people have to self medicate. Wish you good luck and a good dr :). You’ll find the way ❤️

TJS50 profile image
TJS50 in reply toeda123

I know it’s so hard and you can’t explain how you feel. I’m getting my bloods done again so fingers crossed but I thank you all again ❤️

Denide profile image
Denide in reply toeda123

💙 I am doing my best. If I stop doing good, this HT turns life into a living hell🤣

TJS50 profile image
TJS50 in reply toPinkpeony

Thank you

TJS50 profile image
TJS50 in reply toDenide

Thank you it’s just helps when others know what you are going through too x

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