I need your recommendations, don´t know what to do.

[Ranita2020]

Hello to all! This is my first time writing, but I have been reading your posts everyday for a few months and, beleive me, you have helped me a lot!!!

Thanks to everything I have read in your posts I have been able to make decisions and improve my health. I was diagnosed with central hypothyroidism over a year ago and it has been a long journey to get to where I am today.

Unfortunately, as we all know, it is very difficult to deal with medication with doctors who look at TSH and not much on how you feel. I managed to get my doctor to agree to prescribe Cytomel a few months ago. He gave me 75mcg of Levothyroxine and 12.5mcg of Cytomel. Then we increased to 100mcg of Levothyroxine and 12.5mcg of Cytomel and everything was great, that's where I really started to feel better, and also my cholesterol dropped to a normal value. But then when he saw that my TSH was suppressed he asked me to stop taking the Cytomel. I ignored him and continued taking it, since in my country (Peru) it was very easy to get Cytomel, even without a prescription, and very cheap ($ 5 for a one month supply), but unfortunately the only laboratory that makes them suddenly it has stopped producing them and says it will not produce any more Cytomel at all. For that reason I decided to try to stop taking it and keep only the 100mcg of Levothyroxine to see what happens since my doctor always tries to convince me that I should do that and increase my Levo to 125mcg. I felt great at the beginning but after 1 month I am starting to feel bad again, the same symptoms as at the beginning of this long history and my cholesterol went back up as well.

So I don't know what to do, considering that my doctor will most likely not want me to take Cytomel again and may even want to lower me to 75mcg of Levothyroxine, my appointment is on February 1st.

I would like to try increasing Levo to 125mcg and see what happens, otherwise I think I should go back to 100mcg + 12.5mcg, but that is what I would like to avoid since it is so difficult to get Cytomel. What do you think. Sorry for such long post!

Here are my lab results since I started with Cytomel until this week, so you can see the difference. I always do the tests on an empty stomach, with 24 hours of not taking any medicine:

20/07/2020 (50mcg Levo +12.5mcg Cytomel)

TSH 0.120 (0.270 - 4.800)

FT3 2.72 (2.60 - 4.40) - 6.67%

FT4 13.10 (12.00 - 22.00) - 11%

Cholesterol 220 (87.0 - 199.0)

22/10/2020 (75mcg Levo + 12.5mcg Cytomel)

TSH 0.017 (0.270 - 4.800)

FT3 3.04 (2.60 - 4.40) - 24.44%

FT4 15.30 (12.00 - 22.00) - 33%

Cholesterol 199 (87.0 - 199.0)

30/11/2020 (100mcg Levo + 12.5mcg Cytomel)

TSH <0.005 (0.270 - 4.800)

FT3 4.01 (2.60 - 4.40) - 78.33%

FT4 20.88 (12.00 - 22.00) - 88%

Cholesterol 179 (87.0 - 199.0)

20/01/2021 (100mcg Levo only)

TSH <0.005 (0.270 - 4.800)

FT3 3.47 (2.60 - 4.40) - 48.33%

FT4 20.93 (12.00 - 22.00) - 89.30%

Cholesterol 250 (87.0 - 199.0)

[SlowDragon Administrator]

Welcome to the forum

30/11/2020 (100mcg Levo + 12.5mcg Cytomel)

TSH <0.005 (0.270 - 4.800)

FT3 4.01 (2.60 - 4.40) - 78.33%

FT4 20.88 (12.00 - 22.00) - 88%

Cholesterol 179 (87.0 - 199.0)

These results look perfect

Presumably you also are testing vitamins and did you need to improve vitamin levels by supplementing?

What’s your resting heart rate like?

[Ranita2020 in reply to SlowDragon]

Hi SlowDragon, thank you so much for your reply!

I tested Vitamin D and B12, I am still waiting for VitD results:

B12 369.4 (174.0 - 878.0)

This results are from 20/01/2021

My resting heart rate is between 65 - 75, and my BP always on the low side (90/50 or 10/60).

So you think I should go back to 100mcg/12.5mcg, instead of trying with 125mcg Levo only?

Thank you so much.

[SlowDragon Administrator in reply to Ranita2020]

Your B12 is rather low

Have you had folate tested

Or ferritin and iron tested

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With B12 result under 500 taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

healthline.com/nutrition/me...

[Ranita2020 in reply to SlowDragon]

Hello SlowDragon, thank you so much for all the explanation and links. I just got my Vit D results. I haven´t had tested Folate, neither Ferritin, Iron.

VitD results: 25.9

Ranges as per Laboratory:

Defficiency <12

Insufficiency 12-20

Sufficiency >20 - 160

I am pretty sure my doctor will say I am in range so there is no need for supplementation.

The same for Vit B12 being 369.4 (174.0 - 878.0)

Could you please guide my on how much VitD I should take?

Thank you so so much!

[SlowDragon Administrator in reply to Ranita2020]

Vitamin D, is presumably measured in ng/ml

Rather than U.K. units of nmol ?

[Ranita2020 in reply to SlowDragon]

Yes, it is measured in ng/ml.

[SlowDragon Administrator in reply to Ranita2020]

So your aiming to improve to around 40ng/ml (equivalent of 100nmol)

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

vitamind4all.org/letter.pdf

[Ranita2020 in reply to SlowDragon]

Thanks so much SlowDragon! Have a great weekend!

[pennyannie]

Hello Ranita and welcome to the forum :

Well this seems like such a shame as just going by your results you were certainly going in the right direction once you introduced the T3 :

It is imperative that you are dosed on T3 and T4 blood test results and these should be balanced in the ranges with most people feeling at their best when both these essential hormones are in the upper quadrant of the ranges, all of which your have managed to do and felt better for it.

It is known that any thyroid hormone replacement containing T3 can lower / suppress a TSH:

When you started this trial back in July your TSH was already low / suppressed so I don't understand the " U " turn by this medic.

I guess, as you say, s/he is just looking at your TSH :-

but this needs to be looked at in the context of where your T3 and T4 are, and as both are in range - you are not over medicated and this TSH pretty much meaningless.

Both your T3 and T4 have always been in range and your November results are good:

Is it obtaining T3 since it reads as though local production of this hormone has stopped ?

Can you import from the USA ?

Increasing T4 - may help increase your T3 but for optimal conversion of T4 into T3 we need optimal vitamins and minerals - do you have any results of ferritin, folate, B12 and vitamin D

as these need to be a good levels through the ranges ?

[Ranita2020 in reply to pennyannie]

Hello Pennyannie, thank you so much for your reply. Yes, I think I am going back to 100mcg levo + 12.5mcg Cytomel. Fortunately I still have a supply for 3 more months and will start looking for a new supplier now.

[humanbean]

I was diagnosed with central hypothyroidism over a year ago

But then when he saw that my TSH was suppressed he asked me to stop taking the Cytomel.

Are you seeing the same doctor for ongoing treatment as you were to get your diagnosis? If you are then that doctor doesn't appear to know what he's doing.

Central hypothyroidism is a condition in which your pituitary can't produce enough TSH for your needs. How this arises can differ depnding on the underlying problem.

It is not a disease of the thyroid, it is a disease of the pituitary (secondary hypothyroidism) or the hypothalamus (tertiary hypothyroidism). If nobody knows whether the problem is secondary or tertiary it is known collectively as central hypothyroidism.

Most hypothyroid people have primary hypothyroidism which is a disease that affects the thyroid.

Central hypothyroidism can happen because the pituitary is diseased or damaged.

OR

The hypothalamus is diseased or damaged.

The hypothalamus produces the hormone (Thyrotropin Releasing Hormone) that triggers the pituitary to produce TSH.

If you've been diagnosed with central hypothyroidism (and based on the results that you have quoted this appears to be justified) then your treatment simply cannot be guided by your TSH because your body doesn't produce enough. Instead your treatment should be guided by your Free T4 and your Free T3.

[Ranita2020 in reply to humanbean]

Hi Humanbean, thank you so much for your reply. Yes, I think I am going back to 100mcg levo + 12.5mcg Cytomel. Fortunately I still have a supply for 3 more months and will start looking for a new supplier now.It is very clear by my results that that´s the perfect dose for me. Even though I was not feeling 100% well, I was feeling better than in many years.

[ShonaGreen]

Hi Ranita2020 , I’m in a similar situation with private Endo thinking I possibly have central hypothyroidism so he prescribed me T3 which helped and Free T4 and Free T3 levels starting to improve (more info in my recent posts). But saw ENT recently for silent reflux and he was fixated on my low TSH and contacted GP to advise that I was overmedicated and possibly hyperthyroid, causing doubt as to whether I needed any thyroid medication. Like you, I’m worried about increasing costs and future supply problems, so decided to stop taking T3. I was on 25mg Liothyronine and 75mg Levothyroxine until start Nov, when I reduced T3 dose until stopping early Dec. Felt OK for first few weeks, then constipation kicked in, along with headaches, fatigue and very cold, swollen and sore hands & feet

Had blood tests a few weeks ago and showed both Free T4 and Free T3 below range and TSH now in range. GP agreed to increase me to 100mg Levothyroxine and will do more blood tests in 6 weeks. I’m hoping to see an improvement in the near future and maybe I can cope just being on Levothyroxine, but will consider taking T3 again if there’s no improvement in constipation, etc.

So I totally understand where you’re coming from and hope you can find a medication level with Levo and/or T3 that helps you best, good luck 😀

[Ranita2020 in reply to ShonaGreen]

Hi ShonaGreen, thanks for your message!! The similarity of our cases is impressive. I just read your symptoms to my husband and we are surprised as it is exactly what happened to me, everything was fine the first few weeks and the first thing I noticed was constipation, headache and fatigue. Hope you feel better soon and also hope this problem with liothyronine is solved because from what I see it is something that happens in many countries and that is very sad. It is clear there is people that really need it.Good luck!

[SilverAvocado]

Hi Ranita 2020,

I just wanted to emphasise what some others have mentioned. When you have Central Hypothyroid by definition your TSH will not represent your hormone levels, because your illness is not being able to make enough TSH. Its very important that you are not dosed using TSH. Doctors are often obsessed with TSH and also don't always even know what Central hypo is.

You mention feeling well for 4 weeks on the new dose, but it will always take longer than 4 weeks to settle on a new dose. I find almost anything can happen in the first 4 weeks, and you won't really be feeling how that new dose suits you until at least 6 weeks have passed. It can take even longer for everything to really settle. Everything in thyroid hormone is slow moving.

[Ranita2020 in reply to SilverAvocado]

Hi SilverAvocado, thank you for taking your time, I really appreciate it. Thanks to all of your messages that i have been learning a lot and am able to take care of myself, being that doctors don´t always know much about this illness.

Have a great weekend!!