Update on Update 🤨

[irishacres]

Hi again fellow sufferers

In my last post I had been changed from TEVA Levothyroxine to Mercury Pharma and over the previous few months I had lost 4 and a half stone. A usually impossible feat for anyone hypothyroid and without dieting. But I felt wonderful, the best I had in years

My TSH has been <0.01 for years so nothing new there but my T4 went up from 22 to 32.7 and T3 normal at 4.5

I was told all sorts of contradictory things by my GP and a locum Endo so I decided to sort it out myself.

I made sure I was put back on TEVA and reduced Levo from 175mcg to 150mcg. But this only changed T4 to 31.4 and T3 to 4.4

So, I gradually decreased Levo to 125mcg per day and at last over 5 months have got T4 back in range to 18.4 (Range 12 to 22) but T3 is now low at 3.1 (Range 3.1 to 6.8)

I did what they asked, my own way, but now I have most of my symptoms back that I had 30 years ago when I was 1st diagnosed. I am cold all of the time wearing clothes, thick dressing gown and blanket. Even then my feet and hands are like blocks of ice. My hair is falling out at an alarming rate, I am exhausted all the time, even after 11 hours sleep! I can’t do much before I am so fatigued my eyes hurt to keep open. Everything hurts. BUT I am still losing weight!!!!! It makes no sense.

My question is why dont the so called professionals go by how we feel and not the numbers? I went from wonderful to awful in 5 months just because I had to fit into their boxes.

The private Endo I saw said GPs panic if the numbers go slightly up because they don’t understand the endocrine system at all. He wrote to my GP to ask why they weren’t testing for my extreme weight loss which was far more important and had nothing to do with my thyroid and why my DEXA scans had been stopped (bone density scan) as I have osteoporosis.

Sorry rant over, I just had to get it out of my system. But I know you understand my frustration. Thank goodness for this wonderful group! 🤗

[greygoose]

Sounds as if you have Hashi's. That is a typical FT4 level for someone having a Hashi's 'hyper' swing. Have your antibodies ever been tested?

[irishacres in reply to greygoose]

Hi greygoose

Yes they have been tested and all came back ok.

[greygoose in reply to irishacres]

Did you have both Hashi's antibodies tested: TPO antibodies and Tg antibodies?

I would suggest you ask for an unltrsound to see if there's any damage to your thyroid, because that certainly looks like Hashi's to me. There is no other way your FT4 could possibly go from 22 to 32.7 without a change in dose. A change in brand would not cause that.

[irishacres in reply to greygoose]

I had an IgA tTg which was 0.5. (Range0.00 to 5) and a Se Thyroid Peroxidase Ab conc which was 9 (Range 0.00 to 34)

I don’t know if those were the tests you were referring to? That was when T3 was 4.4 and T4 was 31.4

I had an ultrasound scan on my neck and my thyroid was atrophied. They said because I had been on Levothyroxine for 30 years. They also found growths on 2 of my parathyroid glands and I’m waiting for a Sestamibi scan but I’ve just found out there is a wait of over a year and I’ve already waited four months!!

[greygoose in reply to irishacres]

Thyroid Peroxidase Ab is one of the Hashi's antibodies, yes. The other one is Thyroglobulin antibodies.

IgA tTg is the test for Coeliac Disease.

I had an ultrasound scan on my neck and my thyroid was atrophied.

Ah! So, the odds are you have Ord's Thyroiditis. Ord's is the same as Hashi's but it doesn't have a goitre as Hashi's does. And the end result is an atrophied thyroid. Nothing to do with taking levo for 30 years! That's just something doctors say because they have no real idea what the problem is and know nothing about Ord's. And, with Ord's I've noticed that people tend to have high Tg antibodies rather than high TPOab. That was certainly my case. So, I'm pretty sure that's what you got and why your FT4 suddenly shot up like that.

So, now you've decreased your levo, but the hyper phase is only temporary. Sooner or later the excess hormone is going to be used up or excreted and you will become hypo again, and in need of your full dose.

[irishacres in reply to greygoose]

Well that’s very interesting greygoose! It makes a lot of sense as to why after 30 years my T4 shot up, that’s what I couldn’t understand. One Endo wanted me to stop all Levothyroxine for 6 weeks! You can imagine my response to that. It also explains why my symptoms have returned. Thank you so much I thought none of what they were telling me was right, it didn’t make sense.

I’m due blood tests next month so from what you are saying is it right that my T4 will go down again because I will be under medicated? It’s going to be a fight to get my meds upped again. They said I should only be on 100mcg per day for my height and weight that I am now. But I have kept it at 125 because my T4 was back in range and having symptoms again. Is there anywhere I can gen up on Ords Thyroiditis?

Thank you so very much for your help I feel like finally someone understands. 🤗

[SlowDragon Administrator in reply to irishacres]

I’m due blood tests next month

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum and especially after any dose reduction in levothyroxine

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain OPTIMAL vitamin levels

Low Ft3 will result in poor nutrient absorption

Exactly what vitamin supplements are you taking

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

It’s not a recommended to have over range Ft4

Better to add small doses of T3 alongside if Ft3 remains low once Ft4 is high (but within range) and optimal vitamin levels

[greygoose in reply to irishacres]

I’m due blood tests next month so from what you are saying is it right that my T4 will go down again because I will be under medicated?

Whether that will be long enough for levels to go down is anyone's guess. These swings are totally unpredictable both in length and intensity.

It’s going to be a fight to get my meds upped again.

Probably, yes. This is why antibodies - both of them - should always be tested so that at least the patient knows what's going on! Because doctors haven't a clue! And once they've lowered a dose they really do not like putting it back up again. So, we always advise Hashi's/Ord's people that if you have a 'hyper' swing, to lower your dose yourself without involving a doctor.

Is there anywhere I can gen up on Ords Thyroiditis?

I should imagine that you can google it. Or try the search engine on here for other posts that talk about it. Doubtful that your doctor has ever even heard of it, it's not much talked about, these days. Patients usually refer to it as Hashi's. And doctors in the UK call both Hashi's and Ord's 'Autoimmune Thyroiditis'.

[Polly8855]

I’m having exactly the same fight with my GP my TSH is 0.02 FT4 20.6 - he’s never tested T3 and is wanting to change medication

In 5 years I’ve never been asked once about symptoms and he refused to refer me to endo saying symptoms I did have weren’t related to hashimoto’s and yet all of my symptoms are documented

[irishacres in reply to Polly8855]

I’m sorry you are having so much trouble and I can relate. That was why I went to see a private Endo and it was money well spent.

He wrote to my GP and told her I was still hypothyroid (she said I was hypERthyroid which is impossible) and told her the prescription I should be on. They cannot go against an Endo’s instructions.

My GP referred me back to my NHS Endo and also an ENT on 2 week wait.

It might be worth going the same route although you shouldn’t be denied a referral , have you ever talked to PALS? They can intervene if you have a complaint.

It’s so annoying that they don’t think we know our bodies as well as them. Good luck in getting the help you need. Don’t give up most of us have had to fight to get help.

It’s a specific area of medicine which the GPs are not qualified in so they should refer if nothing else to rule it out.

[Polly8855 in reply to irishacres]

Thank you for your reply I’ve decided to change my GP - this week despite a letter from Coeliac UK saying I should be tested he has decided to ignore that too so enough is enough

[irishacres in reply to Polly8855]

Good for you Polly8855!! Hopefully you will find someone who will listen.

I have found that GPs and especially Endocrinologists do not like it when you tell them about information found on this wonderful support site. Probably because they know we are right and we all know our bodies and how we react to certain things better than they do.

Good luck!

[Polly8855 in reply to irishacres]

I did find it interesting on the application forms that it asks if you are vegetarian or vegan - life choices, but not if you are gluten intolerant or coeliac - no choice and some medications contain gluten

[irishacres in reply to Polly8855]

🤫 interesting but typical. I’m due an MRI next week and they sent me a load of forms to fill in which I did except for one. They asked what my PRONOUN was!! i.e SHE/HER. dear God no wonder the NHS is in such a mess if all forms have been changed to pander to this minority of woke “people”.

[Luna2024]

Any medication change that does not have the same PL code as one your currently on, is caused ultimately by issues that never should have happened in leaving EU.

This recklessness in multiple different types of medicine changes is not recommended by NICE due to harm it can cause. You must be involved in your care as is standard practice. Your ultimately the one effected by medicine changes month after month.

The PL code is there showing you from original brand, on how the binding breaks down in your body. As original manufacturer has so much work to do in trials etc.

The therapy of the medicine must be same in treatment not how it breaks down or absorbed by your body causes issues. Damaging the patient is solely the GP’s duty to do. It falls back on them not the Local HealthTrusts anymore.

Anyone on 14 medicines or more must include the patients health from harm, in so much generic medicines proscribed. This all again is due to the problem of the rich having to disclose everything, and be damned with the people chronically ill.

Please be careful what your given or having changed, without consulting you is wrong and dangerous to your health.

I’m speaking for me who has 20+ medications to take daily is a lucky dip on brand I’m given monthly. Without being consulted about my care, is leaving me very worried and scared. When I wasn’t years a go on the NHS again a party problem of wealthy and declarations of wealth had to be made known at our expense. How much worse are you health wise in 8 years?

Again be vigilant and carefully matching and writing down PL codes and who makes it for reference. Better still keep the boxes and take it to your GP and ask why is this happening to me?

[irishacres in reply to Luna2024]

Thank you Luna

I didn’t know they had changed my Levo brand as the pharmacy make up the tray with all my meds in daily am pm boxes.

As soon as I started having the T4 spike from 22 to 32 in three months I had a long chat with the pharmacist. I told her I must have TEVA for Levo and also they had given me cheap generics for my Clonazepam which I couldn’t swallow. Only TeVA could be dissolved so I could drink it and the generics wouldn’t dissolve.

The pharmacist was great she phoned my doctors and told them they must put TEVA on the prescription then they could get it for me. Since then the pharmacist has given me the patient leaflets with the tray which shows what brand I am given and the side effects to look out for.

I had also looked at the NICE guidelines for prescribing thyroid meds and they stated that mixed brands of Levo must NOT be prescribed. Armed with that info I told my GP and they actually listened for once!

[Luna2024 in reply to irishacres]

So happy you have found an outcome for you. Many people do not understand changing your medicine you have been stable on before can make you ill as it don’t agree with you. As these medicines are different when you look at PL code.

Anyone else who sees this, you have a right to your medicine you name, especially for those with ongoing issues. As the thyroid is heavily linked to your Endocrinology and how everything works and makes you feel. Any hormone imbalance can cause major damage if not spotted quickly.

I’m so happy once again you got good people on your side. Truly wish. More people would care for others like you seem to have. This is great for you firstly that you’ve people in your corner is few and far between today.

[irishacres in reply to Luna2024]

Thanks Luna it’s only taken me 30 years to find my voice🙄 But as I’m apparently “elderly” according to the doctors, I feel I ought to act like it and behave disgracefully i.e. tell them how it is! According to my daughter I have lost all tact 🤣 But I was so tired of being told I must fit into a box that I never will do. When are they going to learn that we are all individuals and should be treated as such!

[NanaV54]

Interesting question. Since the early 1900s, Drs treated thyroid by symptoms and actually used raw thyroid to treat it. Armour introduced armour thyroid and for many years, continued to be treated based on symptoms and metabolism. Once they figured out that most people could convert T4 into T3, and had synthetic T4, with the ability to test levels, Drs were encouraged to treat with synthetic hormone only. I think they are slowly beginning to realize that symptoms should be a part of dosing too. Most country guidelines use symptoms as justification to check for thyroid issues and whether to treat when you've levels are subclinical.

[irishacres in reply to NanaV54]

I diagnosed myself 30 years ago after putting on 2 and a half stone in 6 weeks, constant fatigue, feeling freezing cold in the middle of summer not being able to lift my arm up long enough to clean my teeth and my children saying “mummy you fell asleep again”. I was in a bad way but my doctor kept telling me I was fat and needed to go on a diet even though I only had 600 calories a day. It was only when I saw my face in the mirror and saw the classic moon face that I had seen in my Brother who was hyperthyroid that I demanded a blood test for my thyroid. The same day as the blood test the hospital rang me to go in straight away. I was at the point of going into a coma!

The stupid doctor told me the next time I saw her that it was amazing how many people she had diagnosed with hypothyroidism since I was diagnosed.

She couldn’t see the irony in that!!! But at least I was glad that, as she finally knew what the symptoms were, other people after me got diagnosed quickly and before they died!

[Luna2024]

Can I say one piece of advice for you and others struggling like my own bio will tell you. Please listen to your body as you know it best. When you take time to relax letting it talk to you.

Never allow any Dr. To impose their thoughts on you that it’s nothing not worry is totally wrong without a professional at Consultants level proving otherwise.

I’ve been subjected to that all my life let down after let down for seven whole years even going to a GP on the 18th April asking, begging, to be sent to Neurology to get Anxiety and Depression prescribed a antidepressant for this.

April 23 three days later in hospital for eleven days of testing, bloods ,MRI, CT Scan, and Spinal Tap for fluids to be sent off for testing to clearly show MS diagnosis undeniable then. In eleven days I lost everything I enjoyed doing myself I no longer could do all. Every hobby I loved was gone, as was driving. Get a family member to make the complaint of you don’t or feel you couldn’t do it. Complaints from a family member go further. That’s what my GP told me to do. It gets results faster.

Thanks for reading and take care of yourselves all. X

[irishacres in reply to Luna2024]

Bless you. My heart goes out to you after your experience and diagnosis and you still make time to reassure others. Thank you, you are a special human being Take care of yourself too 🤗