had a meltdown so lost so frustrated need to vent...

[juliarees82]

hey!

So tonight I had a major meltdown. I am hypothyroid - born without one! I am 34 years old and have always taken what the doc says with a pinch of salt. Everything has always been classed as "fine". I've never really paid much attention and just got on with it. I was under an endo till I was in my early 20s then for some reason I was referred back to an e GP. I was on 175mg of T4 and had regular (ish) checkups and bloods done and things were "fine...normal!"

Had my first child at 28 - put up to 200mg and was under a special endocrinologist - they kept me there after I had the baby. Extremely low blood pressure throughout my pregnancy but pretty normal and now have a beautiful 6 year old. Child 2 came at 32 years old and I was again under an endo and raised up to 250mg - on the floor blood pressure again but an okish pregnancy, and dreadful labour but a beautiful baby now 19 months old - after the birth I was put back to 200mg. and stayed there since.

I had started to become curious about my condition after child 1 and was referred back to an endocrinologist but by the time I had my first appointment I became pregnant with child 2, and after the birth I was put back to the GP! Grrr! I had one blood test after child 2 was born and dropped back to 200mcg daily of T4. Since that I had no further follow ups etc - I was just left.

I quickly lost the majority of baby weight thanks to breastfeeding - but became stuck - and a year on after gruelling amounts of fitness sessions, running and countless diets - I am still stuck.. I also started to become exhausted, constipated, cold and very breathless during fitness sessions with very achy beyond normal muscles - especially my calves.

I started to dig around, found thyroid UK, learnt all about T3, reverse T3 (had never heard of it), exercise and diets and their affects on T3 etc etc - I went to my doc who ran a ton of bloods and even sent me for an ovarian scan (even thou I know I was really constipated hence the pain in my lower abdomen)

Bloods came back - TSH was 1.5 T3 was 4.0 and t4 was 24.9 - these were taken over 2 different sessions - TSH and T4 together and when I heard "normal" I saw red. I kicked off, I demanded a copy of the results and when I collected them he had printed out a new bloods form to test T3. The T3 also came back to them normal! I wrote a long letter telling my GP I had purchased T3 to self medicate, and how I felt and requested a new blood test. I rang my doctor a day later and he said he had my letter, but didn't mention any contents and said he had referred me to and endo - which we had previously agreed on.

So here we are a few weeks down the line and I've started my T3

Week 1 I dropped my T4 to 175mcg and added 12.5mcg T3

Week 2 I dropped my T3 to 150mcg and added 18.75mcg T3

The doses get taken first thing on an empty stomach and don't eat for a good hour after.

My mum is not happy at all with my decision to self medicate and we had a massive row tonight as she says I don't know what I am doing and should mess and I am short tempered etc. I've put on 5lbs too over last week or so but I would say that is because I have stopped my rigorous exercise routine and started to eat without caring!

I have also decided to wean off a high dose of sertraline (100mcg daily) I normally take in the evening because I don't want to keep depending on it and I hear it can interfere with hormone absorption. I am now down to 25mcg daily. I have reduced it over past few weeks. My mum thinks I am muddling too much with the medications I am on so am all over the shop.

So I am at a loss. I am back to my post pregnancy weight, getting agitated and crying a lot, hot, stressed and really not myself.

I don't know what to do for the best and it can take up to 6 months for an endocrinologist appointment....Thanks for reading x

[juliarees82]

I am getting no side affects on the T3 just to add and even though I feel I have more energy, I now have a whole new range of symptoms!

[humanbean]

You've dropped your levo by 50mcg and replaced it with approx 30mcg T3.

You've overcooked things. 30mcg T3 is approximately equivalent to 90mcg levo.

Also, you are forcing the pace too much and it will backfire on you. Slow things down.

Just remember that 25mcg T3 is approximately equal to 75mcg T4 and switch over accordingly. Most of us don't increase any faster than 12.5 mcg T3 at a time. And eventually, people may even start making changes at 6.25mcg T3 at a time as they get closer to an optimal dose.

The fact that you're cutting down on your sertraline at the same time as you are introducing T3 is really muddying the waters too. Your bad temper may be as a result of that rather than the T3.

Do you plan to swap all your levo for T3? It may well be unnecessary, and a combo will suit you better.

[juliarees82 in reply to humanbean]

Thanks for your reply human bean.

I don't know I just want to feel well and normal.

I am totally and utterly confused - my normal dose is 200mcg t4 my t3 levels are low according to my bloods and my t4 is at the top end of the scale.

[Muffy]

If your GP will still be testing your thyroid, remember that when you are on T3, you mustn't take it for at least 24 hours before the blood test and always have your blood drawn as early in the day as possible, preferably around 8 - 8.30a.m. When you are on T3, your TSH results will be lower. People who have had a complete thyroidectomy actually do better on Armour Thyroid or other brands of natural desiccated thyroid, so this would be something for you to think about.

What part of the country are you in?

Amazing to think you were just referred back to your GP. Being born without a thyroid really should mean that you are under specialist care.

[mountaingoat83]

Did you ask your GP about increasing your dose of levo a little before trying t3? I personally need my tsh to be below 1. For a long while, mine was very suppressed, but I still had symptoms so I tried t3 for about 9 months, however trying to raise my ft3 this way has given me other symptoms inc heart issues. I have concluded that perhaps my body doesn't actually need my ft3 to be high, which is why my tsh was suppressed, so I have now decided to go back to levo, but at a slightly lower dose than before to try and keep my tsh low but in range. It's only been a week so too early to tell how it's going.

Anyway that was a ramble, but my point is that I understand how you became desperate enough to try t3 yourself, but it is strong stuff and I wondered whether another go at fine tuning your levo dose is worth a shot. We can be very sensitive to it, so I know 75mcg is too high for me but 75/50 alternate is too low so I'm trying 75 mon-fri and 50 at weekends.

I've had times where I've faffed with several variables at once and my mum has said the same - they do have a bit of a point!

I really hope you find a way to feel better x

[jennygrigg]

I think you are doing an amazing job, raising two small children and taking your health into your own hands aswell as exercising and dieting. Given you are on so much t4 and your blood test results show higher than it should be tsh and high t4 with lowish t3, I think you may be converting your t4 to rt3. Have you ever tested rt3? A couple of other things jump out too, I wonder why the doctors think you're 'fine/normal' when they have you on an antidepressant. Depression and anxiety are stereotypical hypo symptoms as are constipation, being cold and air hunger. Also the fact that you are experiencing exercise intolerance makes me think that your adrenals are struggling. When your adrenals are not happy you don't have the cortisol to help convert t4 to t3 and carry it to its receptors sites, instead it goes to rt3. Good iron levels are also critical for these functions. Good work reducing the sertraline too, all antidepressants ultimately lower cortisol, making adrenal and thyroid matters worse. (Having said that though, sometimes we really need to stabilise moods as we tackle the complexities of hypothyroidism and adrenal fatigue) I am sorry your mum doesn't understand your need to find answers and live the healthy life you deserve. Parents get frightened when they see their children unwell - no matter what age Ultimately you may need t3 only therapy if you have a conversion problem, but the first thing to do is check your adrenals, via a 24hr saliva test and also a full iron panel. Once you know where you are with these you can work on the type of thyroid replacement hormone you need. Have a read of the information on rt3-arenals.org, it is a really good site and can help you understand the steps you should take for healing adrenals and clearing rt3. Good luck, take care and keep up your great work. x

[Hidden]

Hello. I'm really not tremendously knowledgeable about thyroid matters despite having been prescribed Levo for about 12years - and struggled terribly with hair loss, weight gain, eczema and severe allergies throughout childhood and child bearing years. I now have various autoimmune problems instead of the ailments which previously afflicted me.

I went to a private endo, hoping to be allowed to try T3 although I only had my T4 and TSH blood results to show him. He agreed that I might be having trouble converting so I've been on a mix of T3 and T4 ever since - for around 3 and a half months I think. I'm now scheduled to see an NHS endo - principally because my GP practice are annoyed at having to pay for my T3 and the NHS endo has agreed that the decisions about monitoring of this should be done by secondary care instead.

My dose of T3 started at 10mcg and has remained at this level. When I finally got my FT3 tested the results showed low fT3 and 4 and suppressed TSH. Here people advised that I increase my dose of T3 but I can't risk this because I don't want to self medicate because various drugs have hospitalised me in the recent past and I don't want to be secretive or have to constantly work out for myself what is causing what (as I do anyway?!).

My thoughts are that, with no thyroid, you should be under the care of an NHS endo and not be self medicating in this way. Being forced to rely on a GP who probably doesn't know their stuff is not okay. If you are struggling to work it all out and possibly over medicating and simultaneously coming of sertraline things will inevitably combust for you I feel.

So if I were in your shoes (and a year ago I came off Cymbalta too fast and got terribly sick - this triggered pneumonia and two lots of sepsis later in the year) I would do one thing at a time. I'd get back onto Sertraline and your previous dose of Levo for a month. Then go back to see the GP and as calmly as possible I would ask to have my endo appointment expedited.

If they refuse then you could explain that you will have to go back to self medicating with the T3 - this time starting at 10 mcg while dropping 25mcg Levo every other night as I'm doing. Monitor yourself for how you are feeling and once you feel things are established you could very slowly and incrementally start to come off the Sertraline - if necessary emptying capsules bit by bit down the sink.

If you just do one thing at a time, and very incrementally, you should begin to feel more in control. Ideally you will do this with a good doctor to help and support you but failing that I would just be terribly careful to do everything methodically and slowly for your own sake and your children's sake. I don't know enough about the science but I do know that sudden and drastic introductions of synthetic hormones while dropping a powerful antidepressant is a recipe made from desperation rather than rational thinking - and you need to keep your wits about you and be calm and collected in order to self medicate and take control.

And this is only in the absence of decent doctoring. I'm still hoping that you can find yourself a good doctor who will hold your hand and guide you through this properly. This is what should happen but realistically it may not be possible with the NHS in such a state. So be your own good doctor and do things step by little step, keeping a journal everyday of what seems to work or doesn't. Best of luck.

[juliarees82 in reply to Hidden]

Some incredible support guys thank you so so much xxx

Twitchy toes you are 110% right and I actually took my first antidepressant again last night. I will drop the t3 down to 6.25 and keep my t4 at 200mg and if I have no endo appointment in the next month il go back to my GP.

Jennygrigg thank you for your very kind words il defo look into a saliva test and my adrenals

Mountain goat yes my mum does have a point thank you for your reply.

Muffy thank you to you to - I am in SW Wales

[Hidden in reply to juliarees82]

👌🏾👍🏻X

[Hidden in reply to juliarees82]

My endo raises my T3 by 6.25 mcgs every 4 weeks until desired effect.

He would not consider raising it faster.

Also he says that 5 mcgs of T3 is equivalent to 19.5 mcgs of levo.

Hope this helps.

Please take things steadily. I know it's frustrating. Most of us on this site have been there and most of us are still there.

Resume your sertraline then thats one thing less to worry about. It works, so for the time being leave it alone. If in 6 months you want to come off it then you and your GP can discuss a reduction plan. I've been there too!

Go easy with the T3. It's great stuff but can bite you on the bum if raised too quick.

It is far easier to do these things with your GP on side than off!

You need to chat with them. I've found that even grumpy GP's can be remarkably helpful when you calmly tell them that you need their help.

My GP has started offering me the tissues before I've even sat down!!

X

Take care

[juliarees82 in reply to Hidden]

Thanks Joes mum! Once again absolutely amazing advice. I will take it all on board and if in a few weeks I don't hear anything from an endocrinologist I will speak to my GP.

xx