Hashimotos and side effects from Levothyroxine - Thyroid UK

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Hashimotos and side effects from Levothyroxine

avocadolover
avocadolover

Hello,

I am currently taking medication for my sub-clinical hypo, which is derived from my Hashimoto's.

I was diagnosed 2 years ago, "normal" TSH ( 0.8) and healthy T3, T4 levels however antibody TPO count of 746. I go back and forth with symptoms and have also been told I am simply depressed. I tried taking Sinthroyd in 2016 and within a month it gave me severe anxiety. I went off it. Last year I have had recurring symptoms, which is when I was told by a new doctor I was simply depressed.

Fast forward, moved states and now I am on 12.5mg of Levothyroxine.

At first I felt nothing and figured my journey to recovery would be rather simple.

Now I am getting those pins-and-needles sensations all over my arms hands and feet. My google search calls it Peripheral Neuropathy. However, most of the pins-and-needles feelings described were by patients with diagnosed hypothyroidism. I am wondering if for me, I am still subclinical enough to go without medication or If i can lower it even more from 12.5 to.... who knows... 8 mg?

I have gone gluten free, and I am concerned that I am hurting myself with this medication instead of helping my thyroid slow down it's hypothyroid fate. Should I give it more time before I take levothyroxine? Should I ride it out? Or am I only adding serious side effects to help my autoimmune disorder?

Help please

Thank you in advance everyone

*EDIT*: Below are my labs , thank you all again so much for your helpful tips and guidance.

LABS FROM 2016:

TSH - .817 ( Note: lowl) Range: 0.55 - 4.78

FT4 - 1.22 ( Note: normal) Range: .89 - 1.76

FT3 : 3.3 Range: 2.3 - 4.2

RT3: 13.5 Range: 7.5 - 19

Ferritin - 40 ( Note: normal) Range: 12 -150

Testosterone, Bioavail - 6.1 ( Note : "High) Range: 0.6 - 5.0

TPO - 746 ( Note: Hashimotos) Range: < 30

Cortisol - 14.3 (Note: Some Stress) Range: 3.1 - 22.4

Uric Acid - 3.0 ( ( Note: Low) Range: 3.1 - 7.8 mg/dL

Bilirubin, Total - 1.3 (Note: High) Range: 0.3 - 1.2 mg/dL

Vitamin D - 41.1 Range: 32.0 - 100.00

April 2018 : New Doctor, much less thorough examination

( Tested around 12:00pm, had fasted but was very hungry)

TSH - 0.97

FT3 -2.8

FT4 - 1.2

TPO - 403

14 Replies
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I really don't think that pins and needles/neuropathy are side-effects of levo. They are hypo symptoms. Or, more likely, B12 deficiency symptoms. Have you had your B12 tested?

Levo is a hormone. The thyroid hormone T4. And taking it won't hurt you. In fact, a stupid little dose like 12.5 won't do anything at all. Neither help nor hinder.

But, before you make any serious decisions, I would suggest you get complete thyroid testing :

TSH

FT4

FT3

vit D

vit B12

folate

ferritin

to see exactly where you are. You cannot base any decisions on a TSH of 0.8 two years ago. As for 'healthy' T4/T3 levels, who said they were healthy? :)

Thank you greygoose this is very helpful. So I will tell you my numbers from 2 years ago and I will then tell you the less detailed numbers from 3 months ago...

March 2016, notes from Dr :

(Tested during early morning, fasting)

TSH - .817 ( Note: lowl)

FT4 - 1.22 ( Note: normal)

Ferritin - 40 ( Note: normal)

Testosterone, Bioavail - 6.1 ( Note : "High) ( I don't even know what this means..)

TPO - 746 ( Note: Hashimotos)

Cortisol - 143.0 (Note: Some Stress)

Uric Acid - 3.0 ( ( Note: Low)

Bilirubin, Total - 1.3 (Note: High)

Vitamin D levels are low according to my Patient Notes.

April 2018 : New Doctor, much less thorough examination

( Tested around 12:00pm, had fasted but was very hungry)

TSH - 0.97

FT3 -2.8

FT4 - 1.2

TPO - 403

For more information, This year has been rougher for me. I have to admit that I was very stressed, and did not eat very healthy, may have drank a bit too often as well. Ate gluten every day.

I have had severe anxiety attacks, hair loss ( had a bald spot that has now thankfully regrow) depression, fatigue, emotional instability

Therefore these last doctors decided to send me to Psych and prescribe me Hydroxizine and Prozac. I never took Prozac . I took Hydroxizine i 6 times total since April . It makes me sleepy, sluggish and my heart beats differently the day after which really scares me and why I don't really like to use it.

Anyway I think you are right and that this is probably Vitamin deficiency in b12, D, as well as Ferritin. I only know that after spending all night on this forum reading everyone's questions and thorough answers. I can't believe I haven't been on Health U before, it is such an amazing corner of the internet. <3

Thank you for your information again and I'll comment on here once I have more answers and get a new thorough examination

Have a great day!

I'm afraid those blood test results really aren't very helpful. All 'normal' means is 'in-range', but it's where in the range the results fall that is important. We need the exact numbers to be able to tell you anything.

No B12 tested, but it's pretty certain that your ferritin is too low.

Your TSH would have been higher had you had it tested at 8 am, rather than 12.

Hi! I reposted the ranges on my post. I had someone else mention that the ranges were needed and yes, good call.

I hope those help.

Thanks again for even being here reading my story by the way

Well, in the first lot, your Frees are only about mid-range. So, not likely to be optimal. Ferritin needs to be up around 100. Still no B12. Vit D should be at least over mid-range. And still no ranges for the doctor's tests.

But, in any case, these labs are two years old. Things can change rapidly with Hashi's. Have you not had any tests in the last two years?

No, I live in the US and after I turned 26 i lost my insurance through my parents.

I am in fact going to see an Endo today and will have up to date results posted soon.

Thanks for your input it helps

You're welcome. :)

SlowDragon
SlowDragonAdministrator

As you have Hashimoto's look at gluten free diet too

Getting vitamins optimal first step. Then try gluten free and/ordairy free

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges.

Post results when you have them, members can advise on what supplements you need and if GP should be prescribing

Low B12 is extremely common

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function 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 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

Ideally ask GP for coeliac blood test first, especially if vitamin levels are low

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

thyroidpharmacist.com/artic...

But don't be surprised that GP never mentions gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

As greygoose says 12.5mcg is minute dose. Unless over 50 years old, recommended starter dose is 50mcgs Levothyroxine

NHS guidelines saying standard starter dose is 50mcgs and that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine daily

beta.nhs.uk/medicines/levot...

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Dear Slow Dragon

I cannot thank you enough for this very informative response. I have learned so much already on this website, and this has helped so much more than what Google searches bring up .

I posted my levels to the comment above yours, in case you feel like looking at my past number and levels. Anyway I will definitely have a thorough lab evaluation soon which will determine what to do next. Probably take more vitamins and minerals. Thank you again and have a lovely rest of your week !

SlowDragon
SlowDragonAdministrator in reply to avocadolover

Without the ranges, it's not possible to assess your results.

Every lab has different ranges

Obviously your TPO antibodies are high

TSH, FT4 and FT3 need ranges added

TSH - .817 ( Note: lowl) Range: 0.55 - 4.78

FT4 - 1.22 ( Note: normal) Range: .89 - 1.76

FT3 : 3.3 Range: 2.3 - 4.2

RT3: 13.5 Range: 7.5 - 19

Ferritin - 40 ( Note: normal) Range: 12 -150

Testosterone, Bioavail - 6.1 ( Note : "High) Range: 0.6 - 5.0

TPO - 746 ( Note: Hashimotos) Range: < 30

Cortisol - 14.3 (Note: Some Stress) Range: 3.1 - 22.4

Uric Acid - 3.0 ( ( Note: Low) Range: 3.1 - 7.8 mg/dL

Bilirubin, Total - 1.3 (Note: High) Range: 0.3 - 1.2 mg/dL

Vitamin D - 41.1 Range: 32.0 - 100.00

Hope this helps Thank you!

Good Afternoon Avocadolover- I think my journey may interest you since it directly applies to your situation. On 12.5mg synthroid I continued to have depression, hair loss and major anxiety. I was switched to Naturthroid (dessicated thyroid with t1, t2, t3, t4)

The antibody attack went down substantially. Note on that medication I was raised every month by 12.5 mg until I reached .65mg ( 4 pills). At that point, after 6 weeks weeks on, no hair loss but mild depression. The prozac then was added to conquer both anxiety and depression. I am of opinion you are not optimized on the thyroid medication that only an expert should be deciphering for you. Although I did feel better on full dose, crying went away, I still was enough depressed that it interfered with working. I also did this journey during menopause which makes hormones go wacky. Is any of your condition contributed to pre- or post menopause?

helvella
helvellaAdministrator in reply to thegemprincess

I think many people would understand what you have posted, but your doses could be very confusing for some.

I suspect you meant:

125 micrograms of Synthroid (could be written 0.125 milligrams).

65 milligrams of Nature-Throid (could be referred to as one grain - four 12.5 milligram or quarter-grain tablets).

Is that right?

Sorry for the confusion. And thank you for clarifying for everyone what I meant.

Yes 1 grain of Nature-throid is what my doctor said is minimum dose from most Hashimoto patients end up taking to control their autoimmune response. Ofcourse some people need less..... Avocadolover, your TPO (autoimmune response) is NOT controlled (less than 30) which indicates you indeed need medication to address it. Seems in my opinion you need more meds not less. I just want to tell you Avocadolover that I am prone to anxiety and when I would go up in dosage the anxiety would initially increase. I had to wait 3 to 4 weeks then it would disappear. Told its part of body adjusting to meds. All I can say when you got the right dosage..what a difference!!!

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