Increasing my levo dose didn't improve anything

[Unforgiven213]

Hello. I am a 20 year old 85 kg male and in the late 2018 I was searching for answers as to why I feel tired all the time, why I sometimes can't breathe properly or have chest pain and headaches.. I did all the tests in the world, many imaging and radiology tests (chest x ray, pituitary gland imaging). Finally I was told that I that I have slightly higher TSH (5.5 which went up to 6.5 in 2 months without medication) and it may be the cause of my problems so I was put on 25 mcg levo for about 3 and a half months. I went back after this period of time, my TSH was at around 3.2 and the doctor has now put me on 50 mcg levo. I feel slightly better than I felt a year ago but I still feel very tired especially in the evenings with no connection to sleep problems, as I tend to sleep very well. All my other thyroid related blood tests came up withing the ranges, TSH being the only one that raised a flag. I also had a thyroid ultrasound made that, in the doctor's opinion revealed that I might have Hashimoto's but no high antibodies values were found in any of my recent blood tests. I am very confused at the moment and I don't understand why increasing my dose doesn't make a difference. How long should it take to feel any kind of difference when increasing the levo dosage in your opinion? Thank you for your time.

[SlowDragon Administrator]

50mcg is only a starter dose of Levothyroxine

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

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

What were FT3 and FT4 results?

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Have you had vitamin levels and antibodies tested?

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 . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

[Unforgiven213 in reply to SlowDragon]

Thank you for your reponse. Indeed I didn't test Vitamin D, B12, folate and ferritin and I will proceed to do so. My FT4 is in the top third and my FT3 is a little over half way. The thing that I noticed though, is that 6 months ago when my first test was made, my Antithyroglobulin Antibody results were at 20 with a normal range of 5-110 but now they are at 115. My GP didn't mention anything about this so I considered them to be just above optimal values but still fine. Could that be because of Hashimoto's ?

[SlowDragon Administrator in reply to Unforgiven213]

High thyroglobulin antibodies can be due to Hashimoto's and can cause symptoms

ncbi.nlm.nih.gov/pubmed/303...

Link about high TG antibodies

healthline.com/health/antit...

[Unforgiven213 in reply to SlowDragon]

Hello. I ran tests for folate, ferritin and B12. B12 came out as 396 pg/ml with a normal range of 197-771, Ferritin came back as 49,3 ng/ml with a normal range of 28-365 and Folate was at 3,11 ng/ml with a normal range of 3,00-17,00. Folate and Ferritin seem pretty low values especially considering that I am young and I eat salad and eggs regularly, which I saw that affect Folate levels. How should I proceed with this information?

[SlowDragon Administrator in reply to Unforgiven213]

Hi

Sorry missed this reply

With Hashimoto's it's not how good our diet is but how little nutrients we can absorb due to poor gut function

Hashimoto's frequently affects the gut and leads to low stomach acid and then as direct result, low vitamin levels

Low vitamin levels affect Thyroid hormone

So it's very important to get all four vitamins optimal

No vitamin D test?

vitamindtest.org.uk

B12 and folate especially, on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Do you have Low B12 symptoms ?

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

healthunlocked.com/thyroidu...

Iron is complicated. You can have low ferritin and normal iron, or even high iron. Ferritin is the storage form. Ideally ask GP for full iron panel testing

Or simply increased iron rich foods like red meat, plus liver or liver pate once a week. Daily vitamin C may help improve iron absorption

With Hashimoto's, 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, 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

Assuming 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...

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

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

restartmed.com/hashimotos-g...

As a young male you are likely to eventually need somewhere between 100mcg and 200mcg Levothyroxine

Getting thyroid bloods retested 6-8 weeks after each Levothyroxine dose increase and /or after working on improving vitamins

[Lalatoot]

There is a difference between the words normal and optimal. Normal means that your results fall somewhere within a wide range--optimal means that the blood results are good for you. So being tol your bloods are normal does not mean that they are necessarily optimal. For example my lab has the range for ft4 as 12 to 22. I would be told my blood result was normal if it was 12 and I would be told it as normal if it was 22. We need precise figures and ranges and we need each one of us to find out by trial and error where we feel optimal. I don't want to be NORMAL!!

[shaws Administrator]

Welcome to our forum,

You are not alone in wondering why you're not given more information from the medical profession. I think it's because they know very little except to look at at the TSH result alone.

You've found out that few doctors know much more than to look at a TSH (thyroid stimulating hormone) result.

Thyroid hormones are T4 and T3 - T4 is an inactive hormone and should convert to T3. Levothyroxine is also known as T4 and liothyronine is also known as T3 - the active thyroid hormone needed in our millions of T3 receptor cells. The brain and heart contain the most cells. T3 is the 'fuel' in order for our body to work efficiently and effectively.

Some members cannot convert levothyroxine into sufficient T3 but as dose is increased so might T3.

It is a big learning curve I'm afraid but we can recover - DESPITE the regulations that only levo should be prescribed.

SlowDragon has given her good advice. We've to aks questions, read and learn how best to recover as I doubt it will come from many of the professionals. The following 'Safely Getting Well etc' is by one of Thyroiduk's Advisers who, unfortunately, died through an accident.

naturalthyroidsolutions.com...