Reduced dose in Levo thyroxine ? Anxiety fatigue weak

[Sixties123]

Hi there , I have been taking 125mcg levo and 20 mcg of T3 for a few years now . Spoke to consultant over phone 2 weeks ago. Told to reduce levo by 25mcg . I told him I had been feeling my heart beat a lot and my bp was going up around 150/90 or there abouts . This is high for me . Also I have ventricular ectopic beats and aortic regurgitation. (Which I don’t know if there’s any connection) my heart rate resting is around 92 bpm and when cycling on one occasion went to 200 bpm and scared the living daylight out of me ! I felt dizzy and heart pounding in my head . And weight I cannot lose weight and infact it just rises all the time 😔 I think this prompted him to say my bloods suggest I’m being over treated a tsh of <0.02 for years and last one 0.02 ft3 5.9. ft4 15.4 these were taken around a month ago . My other consultant has never been concerned about my suppressed tsh . I am worried because ;can the drop in thyroxine from 125 to 100 cause : anxiety , feeling of jitteriness in my chest , emotional crying and stressed out ? Weak, painful knees and hips and fatigue ? Or am I just imagining all of this ? I’m feeling pretty miserable right now . I have more bloods to be done in June . Anyone who respond thank you so much in advance xxx

[FancyPants54]

I can only go by my experience, but any dose change, up or down, or Levo or T3, hits me around day 3 and leaves me pretty messed up for the next week - 10 days. Anxiety and stressed feelings are some of my regular symptoms with it.

Your resting HR is quite high. Did you do your blood test in line with our patient advice? ie 24hrs since last Levo and 8-12 hours after last T3?

[Sixties123 in reply to FancyPants54]

Hi yes that sounds like me . Does it go away after 10 days? Yes I get my bloods done exactly as I’ve been advised on this forum . Hope you are doing ok x

[FancyPants54 in reply to Sixties123]

It usually does settle for me. But it's hard coping with the misery it causes first. I feel very down today and that's annoying as it's a kind of extended birthday weekend and I'm supposed to be enjoying myself.

[Sixties123 in reply to FancyPants54]

Aw happy birthday 🥳 , yes it is hard to deal with and people just think you’re moaning cos your tired; stressed: anxious etc it’s very difficult x I appreciate you contacting me with your experience 👍

[FancyPants54 in reply to Sixties123]

Thank you. I have a lot going on at the moment because we have builders converting and extending a small barn in our garden for my mum to move into and it's a bit full-on. So I thought I'd give myself a weekend of peace and just do nice things for me. I tried reading a novel in the warm sunshine and nodded off! I feel slightly anxious all the time and a bit out of breath and out of sorts. Typical for me of a dose change. It should pass.

[Sixties123 in reply to FancyPants54]

Take care and time for you x

[Buddy195 Administrator]

I have increased anxiety if my thyroid medication is not optimal; I’ve experienced the same symptoms with over range T4 and when my levels have dropped too much. I have to make changes super slowly, ie increasing of decreasing in x 12.5mcg Levo alternate days, as medication changes seem to spike my anxiety levels.

Can you supply the ranges (in brackets) for your results, as these vary between laboratories.

[Sixties123 in reply to Buddy195]

Thanks for the support . The range for ft3 is 3.1 -6.8 and ft4 is 11-22 tsh is 0.3-4.50 thank you

[Buddy195 Administrator]

TSH <0.02 ( 0.3-4.5)

FT3 5.9 (3.1-6.8)

FT4 15.4 (11-22)

I think would try 112.5mcg as a compromised reduce dose. I feel lucky that my endocrinologist has never worried about suppressed TSH (as it’s expected on combination treatment). After 8 weeks on a reduced dose, I’d retest & post results on the forum. You may need your ‘old dose’ reinstating, as some people feel better with T3 and T4 higher in the range.

[greygoose in reply to Buddy195]

I think you mean a suppressed TSH, not T3.

[Buddy195 Administrator in reply to greygoose]

My sincere apologies …. I certainly mean suppressed TSH! I will edit my reply, so I don’t confuse more members!

[humanbean]

Some of your symptoms could indicate that you have low iron and/or low ferritin (iron stores). Both of these are common in thyroid disease. Have you had any of the following blood tests carried out in the last year?

Ferritin

Iron Panel

Full Blood Count

If you've had any of the above tests then please post the results and reference ranges, either typed in or you can post an image of the results, making sure to hide any personal and identifying information, such as your name, date of birth, NHS number, address. You can put one image in every reply.

[humanbean in reply to humanbean]

You should a look at this thread and watch the video link within it :

healthunlocked.com/thyroidu...

.

[Baggiesfan in reply to humanbean]

Thank you that's a very interesting video. My ferritin and esr are always very high and I'm struggling with weight. Might have to look into this more, no particular bloat or pain though.

[Sixties123 in reply to humanbean]

Thanks for replying. Ranges :ferritin 23-400B12. 197-771

Folate. >2.5

And Vit D 50-150. Result 82 I take vit d supplement

Results vit d is in text above

[humanbean in reply to Sixties123]

You need to include the reference ranges with each result and also the Vit D level is missing.

[Sixties123 in reply to humanbean]

Hi I put the reference ranges above in the text and also but d result too

[humanbean in reply to Sixties123]

Sorry, I hadn't noticed them.

Ferritin 69 (23 - 400) 12% of the way through the range

Folate 13.2 ( > 2.5 )

Vitamin D 82 (50 - 150)

Vitamin B12 573 (197 - 771) 65% of the way through the range

For Folate your result is okay - we usually suggest a result in double figures is fine, but it is difficult to tell with a range like > 2.5.

When the range for folate is of the form (X - Y) optimal is considered to be somewhere in the upper half of the range.

To raise folate you can either eat more folate-rich foods, or take a B Complex with activated B Vitamins, such as Thorne Basic B. If neither of these raise your folate enough you can take a supplement called methylfolate in addition to a B Complex.

Methylfolate can be easily sourced on Amazon or other sites selling supplements. Avoid folic acid!

Vitamin D

That is an odd reference range - the top of the range is quite low compared to many vitamin D tests. Your result of 82 is not too bad. You might want to raise it to 100 - 125 if you can. If you supplement always take vitamin D3 NOT D2. Note that supplementing vitamin D3 will raise your absorption of calcium from the diet. You need to make that calcium end up in bones and teeth rather than lining the arteries. To achieve this you will need a magnesium supplement and Vitamin K2. Please read replies by SeasideSusie who has written about those last two quite frequently.

Ferritin

12% of the way through the range is not really high enough for many people, and a result of mid-range or a little bit over is what to aim for. It would be worthwhile to get an iron panel done privately with a finger-prick test.

medichecks.com/iron-tests/i...

For a discount code :

thyroiduk.org/help-and-supp...

You might find this thread of interest and it has some warnings about possible dangers when supplementing iron :

healthunlocked.com/thyroidu...

It is possible to buy prescription-strength iron supplements from pharmacies without a prescription in the UK. A reply to another member on what supplements are available in the UK is given here :

healthunlocked.com/thyroidu...

Vitamin B12

Various optimal levels for B12 are quoted from various sources :

1) 500 ng/L

2) Upper half of the range (but no lower than 500 ng/L)

3) Top of range

4) 1000 ng/L

The kidneys excrete excess B12.

The best form of B12 is methylcobalamin which is available from Amazon or other sites, but if that doesn't suit then there are other forms of B12 available for sale.

If you need to raise folate and B12, it is a good idea to take a good quality B Complex. Once you have raised B12 to the level you want drop the methylcobalamin. Once you have raised folate to the level you want drop the methylfolate. Then continue with just the B Complex. If levels of B12 and/or folate start to drop you may need to continue taking the separate supplements just to maintain optimal levels. You may only need to take B12 and/or folate for a day or two or three per week.

[Sixties123 in reply to Sixties123]

Wow thank you that is a lot of information 👍 I will need to read and re read to understand and also check the threads and information you have sent me . Much appreciated 👍

[greygoose]

I am worried because ;can the drop in thyroxine from 125 to 100 cause : anxiety , feeling of jitteriness in my chest , emotional crying and stressed out ? Weak, painful knees and hips and fatigue ? Or am I just imagining all of this ?

Yes, it certainly can. And much more besides. If you were converting some of that to T3, your FT3 will now be lower, and that will be having an effect. Also, some people just need their FT4 at a certain level to feel well, even when they are taking adequate T3.

TSH 0.02

ft3 5.9 (3.1-6.8) 75.68%

ft4 15.4 (11-22) 40%

Your FT4 really isn't that high, so what's the point of reducing the levo? He's dosing by the TSH, which is oh so wrong. But, he should know that reducing the levo by 25mcg isn't going to have any effect on the TSH. It is suppressed because you're taking 20 mcg T3. That's what T3 does. And, it really doesn't matter! Sounds like one of these doctors that just has to meddle with people's doses, just for the sake of meddling. They do more harm than good!