Latest results and advised to stop T3

[Vic198]

Hello,

I'm currently on 75 levothyroxine and self-medicating 37.5 tyromel. I had fasting bloods done last week and the results were:

TSH <0.01 (0.3-4.2)

FT3 3.9 (2.6-5.7)

FT4 9.1 (9-19)

My last bloods in December were:

TSH <0.01 (0.3-4.2)

FT3 3.2 (2.6-5.7)

FT4 8.3 (9-19)

I didn't change my dose in between the two blood tests.

I saw my GP back in January as I was still feeling unwell and she agreed to refer me for the first time in 15 years to an Endocrinologist. The appointment isn't until June. I had a call today from my GP to say that she had spoken to the Endo team to discuss my latest bloods and my medication. They have advised that I stop my T3 altogether and stay on 75mcg levothyroxine as they believe I am over medicating. I explained that I did not think I can convert T4 into T3 but she said that the Endo said I am on too much and I must stop it and retest in 6 weeks. I told my doctor that I would consider it, but I am not sure what to do now as she said i risk long term damage to my bones etc if I continue with a TSH <0.01.

Any advice would be great. I was pretty unwell for years on T4 alone and, although I feel better than i was with T3, I still suffer a range of symptoms. My doctor said that I can stay on the dose I am on now until June and discuss it with the Endo then if I am reluctant. I also wonder what effect a sudden stop of 37.5 mcg of T3 will have on me!

Thanks for your continued support

[Hidden]

When on drugs containing T3, be it synthetic T3 or NDT, the TSH is pretty much useless. Instead, you need to go by symtom relief and, to a certain extent, lab results, but only to make sure you are not undermedicated.

Your FT3 levels are well within range, and your FT4 levels very low in range. How do you currently feel? Personally, I need to have midrange FT4 levels along with FT3 levels close to the upper normal limit in order to feel truly well and rid myself of all hypo symptoms, but that's highly individual (I take NDT).

Anyway, judging by your free Ts, I'd say there is room to raise both your meds if your symptoms warrant it. Whatever you do, don't care about the TSH, as it's more than likely to be suppressed when taking T3 (my TSH has been <0.01 for the past ten years). Most doctors are likely to freak out at the sight of a suppressed TSH, but it really is no good indicator when taking T3.

[Vic198 in reply to Hidden]

Thanks for your reply. I have been struggling with this for years now. I initially did fairly well on T4 alone after being diagnosed with Hashi's at 19 years old. But since I has my two daughters I have seen a steady decline. I feel tired all the time, wake up exhausted, have aching muscles walking up the stairs, have dry skin on my upper body and face, granuloma annular on my ankles, bursitis on both hips, have episodes where i have an anxious feeling in my chest and periods of low mood that spring up every so often. I also have constant twitching in my eye and random muscle twitches over my body. I just never feel well and I can't remember the last time I really did. Maybe it's asking too much?

My GP has been kind to finally refer me but I am so surprised that the Endo has suggested this as I too thought there was room for an increase. I explained this to my GP but they are clearly only focused on my TSH. Perhaps I should wait until the June appointment before making an change, or maybe that won't be a fruitful consultation anyway!

[Hidden in reply to Vic198]

I know what you mean. I also did fairly well on T4 only for a few years after being diagnosed with Hashimoto's but, after a few years on it, it was like my body was no longer able to convert enough T4 to T3. So, I basically remained hypothyroid, while being told by doctors that my levels looked just fine (they only tested TSH and, occasionally, FT4). Back then, I did not know as much as I do know...for instance, that you can take any amount of T4 but, if your body is unable to use it (convert it to T3), you will remain hypothyroid, no matter how good your TSH looks like...not even high-in-the range FT4 levels mean anything if it's not being converted to T3...on the contrary, that only increases the risk of excessive reverse T3 levels (rT3 being inactive and blocking the action of free T3).

[SeasideSusie Remembering]

Vic198 I am not medically qualified but I cannot understand why they are insistent that you are over medicated when both your FT4 and FT3 are within range. In fact, considering that you are taking 75mcg Levo, what is happening to it because with your result being just 0.1 into the range it doesn't appear to be going where it should be going! Also, your FT3 is less than half way through it's range. If you were over medicated your FT3 would be over range. They are going by your suppressed TSH and it's put the willies up them! Taking T3 will suppress the thyroid.

I would be asking them to investigate why your thyroid hormone doesn't appear to be doing it's job, it's probably something to do with you're not on a high enough dose.

PS I agree with Anna, you need an increase in dose, not a reduction.

[Vic198 in reply to SeasideSusie]

Thanks for your reply. I feel very frustrated now as I really hoped a referral would be helpful as I feel uncomfortable self medicating. I should have known from reading all the posts on here that that may not be the case. I thought involving my GP would be good but now I don't feel comfortable increasing my dose when she has told me to stop it. The saga continues!

[rsae56]

Your eye and muscle twitching can be helped with applying magnesium oil to the skin (5 times better absorption than taken orally) as it is a sign of magnesium deficiency. It has also a calming effect.

Very important to optimize your levels as magnesium influences a lot of vital functions in your cells.

In Pub Med you can find an article about suppressed TSH and osteoporosis which concludes that there is no increased risk. You could print it out and give it to the endo.

[Vic198 in reply to rsae56]

Thank you. I will get some oil. I have been having the odd bath with epsom salts but the oil could be more effective and consistent. I will have a look at that article too and take it to the Endo.

[guysgrams]

I have had most of those issues to after 20+ years on Synthroid alone. Never quite well. Even the Endo that I was referred to only tests TSH and FT4 when she has me on both Synthroid and T3. Go figure. I ended up having to order my own tests to make sure levels are where they should be. I had way over range RT3 and bottom of the range FT3 and she told me 'nothing to worry about no need to test RT3' she stated I was over medicated and reduced my Synthroid. At the small rate she was doing the reductions to get my RT3 issue resolved I would mostl likely be dead long before it ever got resolved! So took matters into my own hands. I am still struggling but hoping to get things turned around this year for the better.

I also think you are under medicated but am certainly no medical expert.