I need advise because I’m really struggling wit... - Thyroid UK

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I need advise because I’m really struggling with life right now.

Angie10116 profile image
36 Replies

I had RAI treatment for hyperthyroidism ( graves) in April of this year. Then after 2 months I was diagnosed with hypothyroidism with a tsh of 60. I was put on 50mg of Levo for 2 weeks, then I ended up In ambulatory care because I felt so anxious, with bad headache, thirsty, and cold sweats. They moved me to 100mg for 4 weeks, and 150mg onwards. My doctors had no idea what they were doing because I ended up being over treated, and ended up with a tsh of 0.20 and T4 of 35.6. They didn’t even test my levels and just put me on setrenaline for the anxiety and panic. My doctors didn’t take any of my symptoms seriously ( really bad brain fog, no concentration, ocd symptoms, really bad anxiety, depressive symptoms, hair loss and acne plus a lot more!). I went privately to see an endocrinologist and he suggested we stop Levo for 2 weeks as I was being over medicated. My results as of this week are:

TSH: 35.03 (range 0.27- 4.2)

FT4: 7.8 (range 11-26)

FT3: 2.5 (range 3.9/6.8)

It’s now been a week on 50mg of Levo and 3 days on 20mg a day of t3. I take 10 mg in the morning and 10mg in the afternoon. I’ve had all of these symptoms for nearly 3 months and nothing is working. I’m constantly so tired, feel almost tipsy/ drugged from the brain fog ( a sense of unreality) depressed, and just feel so hopeless and scared. I’ve been on the t3 for 3 days and I’ve been more tired and foggy I think. I was really hoping that it could help my brain fog and this sense of unreality because I cannot function properly. I’m scared I will lose my job, I’ve been off for 2 months! I’m looking for advise from you. I don’t know what to do!

Also I tried teva and accord Levo and I’ve stuck to the accord.

So just to recap, since April, my tsh has gone from 60 to 0.20 to 35.06.

I have a b12 deficiency but I’ve had 6 injections last month.

36 Replies
greygoose profile image
greygoose

T3 is not an instant fix. It can take months to feel any benefit. And, 20 mcg is far too high a dose to start on. You should have been started on 5 mcg, and increased by 5 mcg every two weeks until you reached 20 - if indeed you need 20, you may not. But starting on too high a dose can cause all sorts of problems, and that could be what's wrong with you now. :)

Angie10116 profile image
Angie10116 in reply to greygoose

Thank you. Like I said, I’ve only been on it for 3 days, and I’ve had all of the other symptoms for 3 months. Idk what to do going forward

greygoose profile image
greygoose in reply to Angie10116

Well, if it were me, I'd reduce the dose to 5mcg for two weeks - or even 1 - then increase slowly.

Angie10116 profile image
Angie10116 in reply to greygoose

Thank you

greygoose profile image
greygoose in reply to Angie10116

You're welcome. :)

PurpleNails profile image
PurpleNails

How frequently were you tested?

After having RAI you should have had very regular testing as hypothyroidism is expected. You should been given medicated long before you reach a TSH of 60.

Is your B12 back in range? Also important to test Vitamin D, folate and ferritin. Low ferritin can cause hair loss.

“tsh of 0.20 and T4 of 35.6.” Levo should not have been stopped completely. Perhaps reduced slightly. The low TSH is unreliable and your FT3 wasn’t tested but it may have been low. Were you hyper for a long time before diagnosed? As being hyper can make the TSH especially unreliable. Were you on anti thyroid medication before treatment?

Usually levo doses are increases by 25mcg and retested after 6 weeks. If increases are tolerated at a faster rate than that can be appropriate but Im not sure the sudden increasing & ceasing and starting high dose of T3 will be helping you. Are you dealing with GP or specialist?

Taking T3 will show a low TSH so if your doctors is judging your doses by TSH then reaching the correct dose is going to be difficult.

Do you take your doses away from food, drinks and other medication & supplements?

When you test, do you test early in morning after fasting except water? This give highest TSH & lowest FT4. Doctor often think this is not relevant and don’t advise about this. Supplements containing high levels of Biotin (B7) can skew test results. Check labels & avoid 1 week before draw

Teva contains mannitol which many react adversely to, sticking to a preferred brand is good idea.

Angie10116 profile image
Angie10116 in reply to PurpleNails

I was tested 2 months post RAI.

I’ve no idea about b12, I have a blood test in 4 weeks to see how the injections helped. My vitamin D and ferritin levels were all good.

Yeah I agree. Looking back it shouldn’t have been stopped. I was experiencing a lot of hyper symptoms though so my endo decided to stop for a week. Ive been hyper since around 12 years of age. I’m now 19.

I’ve messaged my endo today and said that I’ve not felt any better on the t3 and that I was at my best when I was on 100mg of levothyroxine. He said to stop t3 and start up my dose from 50mg to 100mg starting tomorrow.

I take my dose every morning, before food or drink. I only take it with water and don’t eat for at least an hour after.

Yes I test early in the morning. Thank you for your reply. Do you think it’s a good idea to stop t3 and up my dose to 100mg? My doctors were stupid and only had me on 100mg for 4 weeks and then upped my dose to 150mg, which was significantly too high for me. I felt my best at 100mg to be honest. But again, I was only on it for 4 weeks

PurpleNails profile image
PurpleNails in reply to Angie10116

Generally it’s best to alter 1 dose at a time but you seem to already had so much chop and change its making it more difficult at this stage. Sorry you have had this, Hyper from 12 years old must must have been very hard for you.

Do you think the high dose of T3 has resulted in symptoms or the low T4? I think a low dose of 5mcg would be better and you can see if you can tolerate it better be in a position to increase in the future.

50mcg levo, doubling to 100mcg tomorrow, although you felt better on it before the quick & larger alterations causes shifting levels which can cause symptoms you wouldn’t notice if applied more gradually. I think try 75 mcg at first especially if you keep taking T3. I take low dose of carbimazole so I have never had to juggle levo & lio. Others with more experience & knowledge may offer a different opinion.

Angie10116 profile image
Angie10116 in reply to PurpleNails

Yeah it’s been a pain! I’ve been so anxious since a child because of it. But I’ve never felt as bad as I do now! It’s so horrible. I think that the lio isn’t really helping at all. I’ve not felt any positive changes yet, and even though I know it’s only been a few days, I felt better on 100mg of Levo alone. So I think what I’ll do it just leave t3 for now and stick to Levo. It’s so difficult! I hate this so much! I could deal with the physical symptoms, but I can’t work or drive because of this brain fog! I just feel like tipsy almost all the time and it’s making me feel depressed.

I think I shouldn’t have stopped Levo as it made me hypo again, even though it was only stopped for a week.

Thank you for your support.

sy28 profile image
sy28 in reply to Angie10116

would it be worth trying another brand of Levothyroxine - other members of the forum, myself included, experienced a range of worsening symptoms following the rebranding of Activis to Accord - symptoms ranged from racing heart, palpitations, worse brain fog, excessive hair shedding, hives, tingling, headaches, fatigue, anxiety. On stopping Accord Levothyroxine, these symptoms subsided. I have since filled in a Yellow Card Report. Oral solution Levothyroxine has fewer excipients than tablets, which my GP now prescribes. Hope you feel better soon.

Angie10116 profile image
Angie10116 in reply to sy28

Hi! I’ve tried teva and now I’m on accord. That’s interesting to know! I’ve never heard of the oral solution

Shoesandsocks profile image
Shoesandsocks

Hey, how are you getting on?

I just wanted to say to hang in there as it will get better.

Being persistent in getting the right (probably functional) doctor that will help you look at the whole picture, getting the right dosage of meds, having a positive mindset, making good lifestyle choices and eating nutritious food seems to be what the best specialists advise.

I’ve found these three books really helpful;

Be your own thyroid advocate

It’s not my head, it’s my hormones

Hashimotos protocol

Your hair will grow back, your mind and mojo will come back and you will feel yourself again.

It takes time to heal but it will happen. 🙏

Lx

Angie10116 profile image
Angie10116 in reply to Shoesandsocks

Thank you so much, bless you! I really needed that to be honest. The worst symptom is the brain fog.. I feel so disconnected from the world and I don’t worry about things that normal healthy people worry about. I’m just numb and bleh.

Since July, my tsh has gone from 60 to 15 to 1.5 to 0.20 and back to 35.06. All due to doctors medicating me too fast and also over medicating me.

Could you share your story with me briefly? What symptoms did you go through and are you doing better? I just need a positive story to keep me going ❤️ Thank you so much again x

Shoesandsocks profile image
Shoesandsocks in reply to Angie10116

Hey A!I’m sorry I didn’t see your post until now. I had long covid from Feb this year, and after tests I found out I was anaemic (iron level 10), sub clinic hypothyroidism, adrenal fatigue and high blood pressure.

I’ve been okay and getting by, but the hair loss picture you shared reminded me of a similar picture I took, which was the tipping point when I knew something really wasn’t right.

Hair loss, heart palpitations, high blood pressure, really dry skin, low mood, back pain, loss of mojo etc meant docs screened for everything. Thankfully all other tests came back clear.

But GP wouldn’t treat thyroid.

So, I went private for iron infusion treatment and a functional doctor to get the right meds straight away.

The thyroid and adrenal meds are starting to work and I’m gradually feeling better. But I know I need to be patient too.

I’m normally an avid reader and I only started reading again in the last month or so, reading about four books in September. It was about two years since I’d last read a book!

Consultant thinks I’ve probably been anaemic for six years (as I had a miscarriage and needed a blood transfusion back in 2015).

I had a lot of stress at work and never connected the dots that my health was slowly deteriorating!

So, as well as meds, I’ve made some changes to my diet and lifestyle, and I also write in my journal daily to help me process what’s going on and work on keeping a positive mindset.

The mental clarity is slowly coming back.

You’re going to get better!

Take care, Lx

pennyannie profile image
pennyannie

Hello Angie :

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

As I understand it, RAI is a slow burn, and it can take time before your thyroid is fully disabled, dormant and dead.

RAI induced primary hypothyroidism is more difficult to treat.

RAI induced primary hypothyroidism can trash your vitamins and minerals.

I mention just the above two facts, as the list of potential symptoms following RAI is long and depressing, especially when you have taken this treatment route, and in fact, do not apply to everybody as much as these top two.

It is essential that you dosed and monitored on your T3 and T4 blood test results and not a TSH - though in primary care this may well be all that is offered.

Your feedback loop, the Hypothalamus/Pituitary/ Thyroid - HPT axis broken, as your thyroid is now longer there in the true sense of the word.

No thyroid hormone replacement works effectively until your vitamins and minerals, especially ferritin, folate, B12 and vitamin D are at, and maintained at optimal levels, so this is another area that needs to be regularly monitored.

T4 is a pro-hormone and needs to be converted by your body into the active hormone T3 - which is said to be about 4 times more powerful than T4 - with the average person needing to be able to convert and utilise around 50 T3 daily, just to function.

Some people can get by on T4 only, some people find that T4 seems to stop working at some point in time and need the addition of a little T3 with their T4 making a T3/T4 synthetic combo, some people can't tolerate T4 and need to take T3 only and some people find they feel better on Natural Desiccated Thyroid.

NDT is made from pig thyroid dried and ground down into tablets referred to as grains and contains all the same known hormones as that of the human gland namely trace elements of T1. T2 and calcitonin, plus a measure of T3 and T4 in each grain. NDT was successfully used to treat hypothyroidism for over 100 years and you simply dosed to the relief of symptoms, prior to Big Pharma launching synthetic thyroid hormones and introducing blood tests, ranges and guidelines in the middle of the last century that current doctors seem wedded to.

I have Graves, and had RAI back in 2005, and was immediately put on 100 mcg T4.

I was relatively well for around 8 years and then it was as though the insidious symptoms of hypothyroidism started rubbing me out with a severe cognitive decline and my whole body seeming to dry out - details on my profile page.

Over 2 years of various O/P appointments, instigated initially by my dentist, I was no further forward and referred to as a conundrum by my doctor, and offered anti depressants.

I was refused both T3 and NDT by my doctor and hospital and now I self medicate and buy my own full spectrum thyroid hormone replacement.

Both a synthetic T3/T4 combo and Natural Desiccated Thyroid worked for me, it was like a light bulb coming on in my brain, and I found NDT softer on my body and am now 3+ years into this thyroid hormone, much improved and have my life back.

Angie10116 profile image
Angie10116 in reply to pennyannie

Thank you for your reply! I believe that my thyroid is completely dead right not as it’s not producing any hormones.

I would’ve never agreed to RAI if I knew the side effects on long term health. I was never even told that it can cause these symptoms!

I’m sorry that you had to go through all of those horrible side effects, but I’m very glad that you’re better now❤️

pennyannie profile image
pennyannie in reply to Angie10116

It's not a question of being better - I now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism and am as good as I can be at this point in time.

I too was told nothing back in 2005 and only learnt what I now know some 6-7 years ago ;

I'm a bit like a Humpty Dumpty and have put myself back together again.

Graves is an auto immune disease and as such it is for life though without a thyroid the symptoms you may now experience are not considered life threatening, and you will manage and get through this.

We can live without a thyroid but just need to think a bit more about what we do.

You might like to read around Graves Disease and I found the Elaine Moore Graves Disease Foundation website very interesting regarding why and who may be affected with a diagnosis of Graves so to get a better understanding of your situation and what may trigger your immune system response as Graves does tend to be a stress and anxiety driven AI disease.

Elaine also had RAI and finding no help with her continued symptoms decided to research this poorly understood and badly treated AI disease herself around 20 odd years ago.

I purchased Elaine's first book in 2015 thinking maybe that Graves has come back and what was making me ill - only to read - Graves is an AI disease and the thyroid the victim in all this, and not the cause - as the cause is your immune system attacking your thyroid.

Another book that helped me is written by doctor who has hypothyroidism and is a relatively easy read by Barry Durrant - Peatfield and entitled Your Thyroid and How To Keep It Healthy.

Thyroid UK who are the charity who support this forum have a Library section within their website where, I think, I saw the above 2 books listed and where you can start reading up on all things " thyroid " so to equip yourself better and be able to become your own best advocate.

Angie10116 profile image
Angie10116 in reply to pennyannie

Thank you. I’ve had graves since 11 years of age, and it’s never made me feel this poorly.

I appreciate the book recommendations but to be completely honest, I can’t read for pleasure. I feel like a zombie and can barely do the bare minimum right now. I think it’s because my doctors have medicated me so inappropriately!

Thank you for your reply ❤️

pennyannie profile image
pennyannie in reply to Angie10116

Well, I'm dyslexic and when poorly medicated this became a bigger challenge for me - but you will get there, just read up bits and pieces, and like a jigsaw, bits start joining up and corner pieces and building blocks established and relied upon.

We are here to help and support you, so lean of the forum members as there are people here who have been where you are, as we all wear the same T shirt in trying to improve thyroid health and understanding for everybody.

Take good care ;

Angie10116 profile image
Angie10116 in reply to pennyannie

I’m sorry that it made it worse for you. I had no idea that it plays a part with dyslexia! I’m so thankful for you, I appreciate your help so much and thank you. Please stay safe and the best of luck to you.

pennyannie profile image
pennyannie in reply to Angie10116

The brain needs an awful lot of T3 to function properly - no worries :

And the thyroid controls all your bodily parts including your mental, physical, psychological, emotional and spiritual wellbeing, your inner central heating system and your metabolism so, loosing my thyroid simply compounded many issues and it all takes time to settle and rebalance, with the help of optimal thyroid hormone replacement.

Thank you :

Angie10116 profile image
Angie10116 in reply to pennyannie

Yeah my brain is not working right now 😂 have you experienced brain fog? Or like mental issues? Did they settle?

I didn’t know this when I was hyper. I never felt THIS bad so I just didn’t look into it. But damn! It’s crazy how much the thyroid influences

pennyannie profile image
pennyannie in reply to Angie10116

Yes brain fog is a very common problem experienced by most hypothyroid patients when not optimally medicated.

Mental issues are well documented as well - it all comes down to being on the correct dose of thyroid hormone replacement and getting your T3 where it needs to be for you to be a well as you can be with as few a symptoms as possible.

If you go back into Thyroid UK website there is a list of symptoms of both hypothyroidism and hyperthyroidism - sadly, some symptoms cross over but it gives you an idea of just how many symptoms can be attributed to hypothyroidism and I'm sure there are some not even on the list.

Just take one step at a time, you'll get there.

You're already asking questions and building your confidence - this is a safe place - just ask and forum members will pick you up and support you as most of us have been there already and got through it and then we come back on here to help others in a similar situation.

Angie10116 profile image
Angie10116 in reply to pennyannie

You’re so knowledgeable and empathetic, thank you SO much for the kind words. I will stick to 75mg and just give my body a break from the crazy changes in tsh and T4.

I will go on there now and remind myself of everything. Some symptoms are so scary, it’s crazy to think that they are associated with the thyroid.

This forum is amazing, the amount of support and info I’ve gathered over the last few months have been incredibly helpful. Once again, thank you so much pennyannie, you’re a wonderful person. Thank you

pennyannie profile image
pennyannie in reply to Angie10116

OK then - thank you :

Just one thing to remember tonight :-

You must be dosed and monitored on your T3 and T4 blood tests - NOT A TSH :

Your T4 should be high enough in the range to convert into a good high level of T3.

T4 should convert in your body to T3 at roughly a 1 / 4 ratio -

meaning your T3 reading should be about a quarter of your T4 reading :

Sorry that's more than 1 thing - but equally important to put under your pillow.

Nigh night :

Angie10116 profile image
Angie10116 in reply to pennyannie

Of course, I understand. Thank you for explaining that to me😊

Goodnight and stay safe! Thank you again!

SlowDragon profile image
SlowDragonAdministrator

Please add most recent results and ranges for vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Have you had coeliac blood test done yet

Many Graves and Hashimoto’s patients find absolutely strictly gluten free diet helps reduce symptoms

Angie10116 profile image
Angie10116 in reply to SlowDragon

Hi! I only just saw your comment. In august these were my results:

B12 : 213 (range 180-900)

Vitamin D : 65 (range >50)

Folate : 4.5 (range >3)

Ferritin : 41 (range 15-300)

Since then I had 6 b12 injections and I have bloods in 3 weeks I believe to see if they’ve made a difference. Doctors said everything else was ok.

3 days ago I started taking selenium, mangmesuin, b12, iron, fish oil, and vitamin D

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

All vitamins are too low

Aiming for

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

B12 at least over 500

How much vitamin D are you currently taking

Retest twice year while you work out how much you need to maintain around 100nmol

Taking daily GOOD QUALITY vitamin B complex, one with folate in, not folic acid

This will help maintain B12 between injections too

Remember to stop taking vitamin B complex week before ALL BLOOD TESTS as contains biotin

You might instead take separate folate and B12 during that week

Look at increasing iron rich foods in diet to improve low folate

Angie10116 profile image
Angie10116 in reply to SlowDragon

Thank you for that.

I’m taking 1000 I.U (25ug) Of vitamin D. Is that Enough?

I have a vitamin b complex but I didn’t think I could take it because it contains biotin. Also that only has 1.0ug of b12, whilst the one I take now has 1000ug. I think I should stick to the pure b12 1000ug?

Also today I started folic acid 5mg. Should I substitute that with folate?

Thank you!

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Vitamin D, it’s trial and error what suits each person

Likely to need higher dose than 1000iu to increase levels

Might need 1000-2000iu daily as maintenance dose

Retest vitamin D after 3-4 months on 2000iu ….see if level has gone up

Might need higher dose in winter than summer

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Is folic acid prescribed by GP?

When finish prescription folic acid, look at taking vitamin B complex to maintain vitamin levels

supplementing a good quality daily vitamin B complex, one with folate in may be beneficial.

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

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule

IMPORTANT......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 serum B12 result below 500, (Or active B12 below 70) recommended to be 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...

Angie10116 profile image
Angie10116 in reply to SlowDragon

Yes the folic acid was prescribed ages ago but I didn’t understand the importance of taking it so I didn’t. Silly me! I haven’t actually done a full iron panel. I will have to chase that up with the doctors!

Thank you for all of that information. Do you know if the b12 sublingual lozenges are better than a b12 capsule or tablet? I will add the b complex to the b12 one as recommended, thank you so so much. You’re extremely helpful.

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Generally B12 is better absorbed in mouth than gut

Angie10116 profile image
Angie10116 in reply to SlowDragon

Thank you! I’ll look into the ones you recommended

SlowDragon profile image
SlowDragonAdministrator in reply to Angie10116

Have you had full iron panel test done

Never supplement iron based just on low ferritin

You need full iron panel test for anaemia to see if iron is also low

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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