Was feeling better, now feel awful advice on where to go from here.

[Peanut31]

Afternoon

As many of you know from previous posts I’m self medicating with NDT ( 2 grains) and I’ve added 12.5mcg of Levothyroxine every other day.

This is after going the NHS route with Levothyroxine, my blood tests always looked good, but I felt awful.

The reason for adding Levothyroxine was because every time I tried increasing my NDT I would have symptoms of anxiety, jittery, pulse racing.

I tried 1/4 grain increase, then 1/2 grain with no success, I just couldn’t seem to get passed 2 grains without symptoms.

I did a blood test and left the appropriate gap from taking NDT and it showed my T3 was over hence my symptoms.

Results on 2 & 1/2 grains of NDT

TSH 0.01 (0.27-4.20)

T3 8.29 (3.1-6.8)

T4 17.60 (12.00-22)

As my T3 was over I decided to reduce by 1/2 grain = 2 grains and held at that for 6 weeks.

Results on 2 grains of NDT

TSH 0.041 (0.27-4.2)

T3 5.55(3.1-6.8)

T4 11.1 (12-22)

With those results, I still felt unwell, one symptom, being extremely cold, and unable to concentrate, so as I didn’t want to add back more NDT and running the risk of sending my T3 results over range, I added 12.5mcg of Levothyroxine (not TEVA), every other day, as my T4 results were below range.

I started to feel a lot better, warmer, no anxiety. I’ve also noticed that my muscular pains had disappeared, and neck stiffness as well (this went after taking NDT)

Wanting to know what my levels were, I did another blood test 6 weeks after introducing Levothyroxine including vitamins, Levothyroxine stopped 24 hours before test, NDT 8-12 hours.

TSH 0.043 (0.27-4.2)

T4 13.4 (12-22)

T3 7.41(3.1-6.8)

Ferritin 109 (13-150)

Folate serum 6.91 (>3.89)

Vitamin B12 active 254 (37.5-188)

Vitamin D 100 (50-175)

I also have Hashimotos and I’m strictly gluten free, and don’t eat artificial sweeteners, no fizzy drinks, stick to fresh prepared foods.

As you can see my T4 results have improved with adding T4 and I was just above the T3 range.

Now I’ve hit a problem and I’ve noticed my symptoms returning, this past week I’m noticed I’m feeling absolutely freezing, and it was only highlighted even more yesterday by the fact we had a heatwave, I was in a cardigan and dressing gown at home, and walking around the supermarket dressed like winter.

Ive also noticed as the days have gone by I’m absolutely exhausted in the mornings and throughout the day.

My hair has started falling out again. Even having a shower and getting dressed is exhausting, the muscular pain is returning as well, my shoulders, neck and back have become sore, I recognise the symptoms from previously, my memory is terrible again, this is making me panic as I was so close to finally feeling better.

I feel like a zombie. I’ve ordered another thyroid test kit as I suspect my T3 is over range even more.

I know until I confirm this, it is difficult, but I don’t know where to go from here, do I reduce my NDT and increase my Levothyroxine as it appears I need my T4 results in range for me to feel warm.

I’m desperate to feel better, I know Hashimotos doesn’t help my situation, I wonder if I’m pooling, if that does happen. My husband says as I feel so bad maybe not take my dosage for a few days but, I don’t think that’s the answer as I explained to him my TSH will shoot up.

Hopefully my blood test kit will arrive Monday or Tuesday, but any suggestions please are always greatly appreciated.

Best wishes

Peanut31

[greygoose]

Perhaps you should only have reduced your NDT by 1/4 grain, not 1/2?

[Peanut31 in reply to greygoose]

Thanks for your reply Greygoose

I’m sure I read an article someone posted on here (reply to my post) that maybe it’s a case of needing to add A little bit of T4 to my NDT due to feeling cold.

I still didn’t feel well on 2 & 1/4 grains, I was shaky, anxious it was hell, I didn’t take a blood test on 2 & 1/4 grains though, not sure why, but I remember sticking to 2&1/4 grains for 6 weeks as didn’t want to miss my sweet spot.

It appears I do convert well.

Just a quick question, Is it advisable to not take my NDT dosages in the afternoon (1 grain) say for 2 days so if it’s my T3 results being too high, it has chance to leave my system?

obviously it may affect my blood test results? Like I said the test kits on it way to me and should arrive tomorrow or Tuesday, once I get the results I may know what’s going on.

When I was on Levothyroxine my T3 was mid range and T4 high and a suppressed TSH, but I had awful symptoms, neck stiffness and awful neck pain, freezing cold, anxiety, brain fog, it felt like I still have thyroid symptoms and symptoms from the medication too when you read the side effects. I decided to ditch the Levothyroxine after getting to 125mcg as I had awful dark thoughts that my hubby said straight away stop your medication.

Just wondered if I’m overlooking anything.

Best wishes

Peanut31

[greygoose in reply to Peanut31]

Has there been a dose on which you did feel well?

Stopping your NDT for two afternoons would most certainly affect your blood test results. It would be a waste of a test. You should be on a regular dose for six weeks to get accurate results. So, if you want to change your dose now, hold off on the test for another six weeks.

[Peanut31 in reply to greygoose]

Hi

No I’ve not found my perfect dosage yet.

Best wishes

Peanut31

[greygoose in reply to Peanut31]

Not perfect, perhaps, but which dosage did you feel best on?

[Peanut31 in reply to greygoose]

Hi

It would have to be 2 grains, but, not perfect, I’m beginning to think I will not fully resolve all my symptoms.

Thank you for your replies, as always greatly appreciated.

Best wishes

Peanut31

[greygoose in reply to Peanut31]

I've never heard that you need T4 to be warm. Where did you hear that. I'm on T3 only and my problem is the opposite! I get too hot. But, it's true, some people do need a decent level of T4 to feel well.

I think it will be easier to see a pattern when your next labs are done. So, don't forget to post your results on here, and let's see what's going on.

[Peanut31 in reply to greygoose]

Hi Greygoose

A member sent me this link via this forum.

There was also a website another member sent me, the front page was a lady sat on a park bench asleep in loads of ski wear, winter clothes.

tiredthyroid.com/blog/2017/...

Best wishes

Peanut31

[greygoose in reply to Peanut31]

Well, I'm not convinced. Maybe it's true for some people, but not for everyone.

[Clarrisa]

What do you mean by - you wonder if you are pooling? I too was not feeling well & it was readily apparent during a recent heat spell. My most annoying symptom is weight loss though. I am on only two thyroid medications Synthroid & Tirosint. I believe the Tirosint caused weight loss from past experience. I cut back on Tirosint (with Endo’s OK) replacing it with more Synthroid & felt better the next day.

I bet that tiredthyroid.com/blog/2017/... article you mentioned may shed light on how these separate problems occur. I am curious about your pooling theory. Do you think your thyroid medication(s) third space in the body?

I hope you too are feeling better soon.

[Peanut31 in reply to Clarrisa]

Hi

It was mentioned on another thyroid form.

stopthethyroidmadness.com/p...

Best wishes

Peanut31

[greygoose in reply to Peanut31]

There's no such thing as 'pooling'. T4 has a half-life of 7 days, T3 a half-life of 24 hours. They don't hang around after that.

[Peanut31 in reply to greygoose]

Thanks Greygoose.

On the STTM website they seem to think NDT is the only answer to thyroid issues, so you take advice with a pinch of salt.

Best wishes

Peanut31

[greygoose in reply to Peanut31]

Well, NDT certainly wasn't the answer for me! I think they lack flexibility on that site. In their way, they're as bad as doctors, insisting that one-size-fits-all. We all have to find what suits us as individuals.

A propos of nothing, but on that subject, I put an end to another T4 experiment this morning. Once again, I've been trying to introduce T4 to my T3, just 25 mcg, with a suitable reduction in T3. I stuck if for 44 days, but this morning, I just could not bear to put the wretched thing in my mouth! I feel about half a ton lighter! Physically and emotionally. I do not think that I shall be trying that again. Ever. It's the second time I've tried. But, that's just me as an individual. Many people do well on T4. We're all different.

[Angel_of_the_North in reply to Clarrisa]

I don't think pooling actually exists scientifically - T4 is either converted to t3 or rt3 and then T2 a d then T1 and then eliminated

[radd]

Peanut31

I think 2 grains is your dose because not only did you say you felt your best at this dose but your labs were good too. (we would expect TSH & T4 to reduce when we medicate T3).

Having established the meds & dose, you can investigate why meds are not working ie cortisol issues or low iron, etc ...

Sometimes symptoms can last for months & months after good biochemistry, and if a dose adjustment was coupled with sudden stress (or the such like), then a backtrack in recovery might be seen, and erroneously blamed on meds ?

[Peanut31 in reply to radd]

Hi radd

Many thanks for your reply, I've had several cortisol saliva tests and they show high cortisol morning and mid morning including low DHEA. I have been taking holy basil and ashwagandha to try and help, here are my vitamin levels I did very recently (June)

Ferritin 109 (13-150)

Folate serum 6.91 (>3.89)

Vitamin B12 active 254 (37.5-188)

Vitamin D 100 (50-175)

Best Wishes

Peanut31

[Luna1390]

I took Dr. Alan Christianson's 7-week thyroid course and he said when FT3 gets too high, it can cause hypo-like symptoms. I am wondering if your desiccated dose is too high. When you take too much, it depletes your cortisol, which causes those anxious, shaky feelings, hair loss, etc.

The Tired Thyroid book might be helpful for you. It has helped me quite a lot. The author also combines NDT and T4. She does a dose of 1-1.5 grains NDT and 25-75 mcg T4.

You can check other labs to see if your NDT is too high. Fasting blood glucose, ALT, RBC, hemoglobin, hematocrit, alkaline phophatase, will all start to get too high according to The Tired Thyroid book.

I have been on Nature-throid for the last 15 months and added Synthroid to that 3 months ago. I also could not tolerate NDT above a certain dose and that is why I added Synthroid. I have had to raise Synthroid slowly (every 4-6 weeks) and only by 6 mcg each time. Otherwise, I get anxiety and insomnia.

I hope this helps somehow & you find a good dose and feel better soon!

[Peanut31 in reply to Luna1390]

Thank you for your advice, yes it was helpful.

Best wishes

Peanut31

[serenfach]

Thanks for posting this as it mirrors how I feel. I am now on NDT only, but test results show I am undermedicated on 21/2 grains, if I go up to 3 I get jittery but still feel tired. I have tried cutting the pills to go to 2 3/4 grains but it is almost impossible.

I was ill on just Levo, much better on levo and T3, but much better again on NDT. Just tired all the time and even if I get 9 hours at night, still exhausted all morning. Oddly enough I am at my best after 7 in the evening, so household stuff gets done then.

I hope you find your "sweet spot" soon.

[shaws Administrator in reply to serenfach]

This link might be helpful:-

naturalthyroidsolutions.com...

[Peanut31 in reply to shaws]

Thank you

Best wishes

Peanut31