Is it usual to feel better after starting levothyroxine only to start feeling exhausted again some 9 weeks later?

[ah2019]

I am having my first re-test tomorrow since starting on levothyroxine in November after being diagnosed with hypothyroidism. After about a couple of weeks I noticed improvements on how I was feeling, even started to lose a little weight! I felt less tired and the feeling of discomfort in my throat lessened, and I definitely felt an improvement. This last week, particularly in the evening I have started to get that exhausted feeling again, The aches and stiffness after being sat down or when I get up in the morning seem to be happening again after improving for a time.The weight I put down to extras over Christmas It will be interesting to see how things have changed with my blood tests. I am also having antibodies and vitamins done this time which weren't done before.

[Lalatoot]

That's what usually happens - the symptoms returning indicate that you need a dose increase. Blood tests will show if this is correct.

[SlowDragon Administrator]

What dose of Levothyroxine were you started on?

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 is in top third of range and FT3 at least half way through range

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

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

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

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Have you had thyroid antibodies tested?

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

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

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

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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

Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

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

Come back with new post once you get results

[Willowrabbit]

Hi,

Just read your input, and you are the first person to mention aches and pain you get after being inactive for a while. I was beginning to think I was the only person and was getting a bit paranoid, Even when I stop taking Levo it still happens, it's ruining my life, I don't know what to do to make it stop, so if someone replys to you who knows how to stop it please let me know, hope you find something that stops these horrible pains.

[ah2019 in reply to Willowrabbit]

Hi, sorry to hear that you suffer in a similar way. I am only just starting to understand different aspects of hypothyroidism and don't even know exactly that this is a related condition, the aches and stiffness on being inactive. Its almost like I have to shake it out when I get up from sleeping or sitting too long. Feel aged when I first get up with stiffness, then it subsides as I move about. So thankfully I`m not in pain all the time but obviously something is not quite right, I`m only in my fifties.

As I said my first check of bloods was today, so will see what doctor thinks next.

[Rhsana in reply to ah2019]

Hey - I have this too - LDN has helped me with the aches and pains - I used to need help getting off the sofa or up the stairs some days xx

[Rhsana in reply to Willowrabbit]

Hey - I have this too - LDN has helped me with the aches and pains - I used to need help getting off the sofa or up the stairs some days xx

[Indygo in reply to Rhsana]

What's LDN?

[Rhsana in reply to Indygo]

ldnresearchtrust.org/what-i...

[Indygo in reply to Rhsana]

Thank you

[djb200]

Yes, I felt incredible for the first month. I was bouncing out of bed, something I hadn't done for years. All my aches and pains completely disappeared, I could think properly and I was living life again. I was amazed just how much control my hypothyroidism had had over my life. Literally 30 days in that all stopped and I went back to what I was before. Four years on and I've never got back to that amazing (normal) feeling. I still ache all the time, I'm tired, fat, my short-term memory is shot. I have bloods every 4 months; sometimes they show ok, sometimes I go up 25mg and sometimes I come down 25mg. It's a rotten journey that I don't ever feel has been fixed.

Then I got a fibromyalgia diagnosis, which I think they give you when they can't explain what's happening. I hope your experience is a better one.

[JaclynB in reply to djb200]

I also get the same symptoms as you. Aches and pains are terrible. The more synthroid I take the worse I feel

[RockyPath]

The response of your body to levothyroxine therapy is suggestive of one of a number of fairly common genetic conditions that impairs conversion of T4 (the Levo) to T3 used by your cells.

In this situation, when you start therapy with Levo, it builds up in your body after initiating treatment, and you feel better and then worse.

The half-life of levothyroxine (T4) is nine days. This means that on the first day you took it, you had the full amount of T4 in the tablet in your body all day, and it only slightly began to decline on the second day, until by the ninth day, half of that first tablet's T4 was still present. For each pill thereafter when you started treatment, the same thing happened, so that by Day 18, the whole of Pill Number One was finally gone, and the other 18 were accumulating a higher and higher amount of T4 in your body.

I hope you can picture how this long half life can be like dirty laundry piling up in your home.

This is ideal for the majority of people who metabolize the T4 as expected. The level of hormone builds up and eventually stabilizes after about six weeks.

To continue the laundry metaphor, so it looks like a busy commercial laundry, happily humming along, keeping up with the workload.

If you have one of the many genetic polymorphisms that impair conversion, you build up T4 until your body responds by producing Reverse T3 (rT3) in response, and this makes you feel just as bad as before you started therapy. Things sometimes get considerably worse, if the physician ignorantly tries to remedy the situation by giving you more of something you cannot process correctly. This happened to me.

The mountain of dirty linens and uniforms builds up and builds up until stuff is billowing out the door into the parking lot and you cannot move or think.

If your labs had included rT3, (which some people think is like looking for unicorns in your bloodwork), it would have shown a rise in rT3 with the increasing of the dose. Always get labs done first thing in the morning. Never in the afternoon.

To eliminate hypo symptoms in this scenario, you cut back on Levo and add T3 (or take NDT). Some people must take only T3, but that's another story.

And if this weren't enough, many fatigue, immune impairments, and other chronic, treatment-resistant symptoms can be traced to a collection of genetic polymorphisms that are quite common in the people of European ancestry. I discovered this in my search for a solution to the things that have been mentioned on this post. It was nearly impossible to find anyone who understood, but last Friday I stumbled upon someone who had been visited by a representative of a company making special L-methylfolate supplements for people with this collection of genetic conditions. What happens is at reduction by 40% to 60% in the production of neurochemicals and a host of vital energy-cycle components. Your mitochondria are screaming for help but no one is listening.

There is no way to measure this except genetic testing, which I did with 23andMe. I had to send the raw data to StrateGene for the report.

I walked out of the clinic Friday at noon with a handful of samples, courtesy of the doctor, and an order at the pharmacy for this unusual nutritional supplement not found among the vitamins on the shelves. By Sunday, having taken three doses of 15 mg, I felt better than I have in years.

This link is to a company selling a product that might not be ideal, but the table lower down on the page shows the known genetic polymorphisms and the results they produce.

\\neurobiologix.com/genetic-t...

I'm actually trying to obtain a different product, but demand has spiked, due to increased knowledge. This company owns the intellectual property to a more efficiently utilized form of L-methylfolate. My guess is that it is the one given to me by the doctor on Friday. The cost at the pharmacy was $190 for a month's supply of 30 capsules. Insurance does not cover it. This sent me looking for the source.

quatrefolic.com

Then there is a company I found on Friday selling genetic testing (at what cost I do not know. I spent $150 with 23andMe, and a further $49 on the StrateGene analysis). What's interesting is the simple graphic that depicts only a PART of the problem, only a SINGLE genetic polymorphism, as opposed to the neurobiologix website that lists a table but no picture.

nutritiongenome.com/what-is...