I’m in need of some help/advice please!

[Jojozo]

Hi there,

I’ve got Hashimoto’s and I was first diagnosed with an underactive thyroid in my early 20s. I’m 43 now and feeling worse than ever.

My Thyroxine dose got lowered from 150mg to 125mg around a month ago ago due to high T4 levels. It coincided with me getting ill – sore throat, achey limbs, fatigue, low mood, anxiety, grumpy, confusion, dizziness, headaches, sinusitis, temperature changes and lower abdomen/stomach pain, all of which I’ve experienced when this has happened in the past. But could this just be a coincidence?!

Weirdly I’ve also noticed that my eyesight has got worse in the past few weeks. I had an eye test six months ago and my eyesight was great but now things have become blurry, although this could just be coincidence too. I also had a load of blood tests done last week and, aside from my thyroid results, they’ve all come back normal. It makes no sense! Of course I don’t want them to be abnormal but I was hoping there would be an obvious answer in there.

This weekend I got chronic cystitis (I get it pretty regularly and it comes on really suddenly and within hours I’m weeing blood. Sorry if TMI!) I’ve been on antibiotics for four days but it’s still lingering.

I went back to the doctors yesterday and the GP I saw said that the reason my TSH level is suppressed is because my T4 level is high, and that’s what’s making me ill because the TSH is what tells my brain to make the thyroid work. I’m sure he’s right as he’s the expert but it’s so odd that every time they lower my Thyroxine I get ill. Do I just need to give my body more time to readjust? The GP was also very sceptical about the role of T3 (I ran out of that this week because my new lot is taking ages to arrive) and even though I certainly wasn’t trying to get him to prescribe it he wouldn’t even engage in a conversation about it.

Having said that, interestingly I’ve just realised that my TSH levels began to become supressed after a private doctor put me on T3 at the end of 2014, so I’m wondering if that’s an issue? When I saw the private doctor he said my T3 levels were ‘disastrous’ and that my body wasn’t converting T4 to T3, so I started taking 25mg of T3 per day, which made a difference.

I’ve attached the results of my last 17 tests (thorough!) which shows that my T4 is consistently high and my TSH is consistently low. During this time my T4 dose has been up and down but my T3 has remained the same. The two tests I had done quite close together (22nd June and 12th July) look very different because I was caught on the hop with the second test so I’d taken my Thyroxine that morning, whereas I hadn’t the first time.

Just to add more into the mix I’m also peri-menopausal, I have leaky gut and I was on the coil and oestrogen patches for three months earlier this year (which my body hated) and the GP told me last week that oestrogen can have an adverse effect on the thyroid.

I am still suffering with abdominal pain (which is to be expected due to the cystitis) but I also have all the other symptoms, and nothing seems to be helping. I’m taking painkillers and I have Avamys spray for the sinusitis but it’s not touching it.

This has all been going on for years and I just want to feel well and know that if I arrange to do something I will have the energy to do it. I slept for 14 hours recently and still had no get up and go the following day.

I don’t drink or smoke and I eat pretty well so I can’t blame my rock’n’roll lifestyle. I can’t afford to go and see another private doctor again at the moment so I’m relying on the NHS/the internet to try and work out the next best steps.

Apologies this post is so long but I would HUGELY appreciate it if anyone can shed some light on any of this!

[swalls48]

wow this is a fantastic post! such a great example of what many thyroid patients unknowingly have going on! you will certainly receive some good advice on this one. i wish everyone was this thorough! i will weigh in once I have time to review this post in its entirety.

[shaws]

How can doctors or endocrinologists not be aware that it is T3 (liothyronine) which is the ONLY active thyroid hormone required in our millions of T3 receptor cells. It runs our whole metabolism and heart and brain need the most.

T4 (levothyroixine) is T4 only and has to convert to T3. If we don't convert optimally, then our receptor cells haven't sufficient T3 and we will feel very symptomatic.

[Jojozo in reply to shaws]

The GP totally shut me down on T3 and was quite patronising. I challenged him and pointed out that my T3 levels are rarely, if ever, tested and I asked why and his reply was, "Some people's are." I'm not sure how that benefits me?

Meanwhile, the NHS endocrinologist I saw earlier this year told me I have to stop taking the T3 in order to allow my body to convert the T4 in to T3. When I told him that the private doctor had told me several years ago that my body wasn't converting (I had been on T4 alone for 18 years at that point) he shook his head at me like I was an idiot. It's making me question what I believe, which is that I do need to take T3.

Why on earth do doctors think we would want to source, pay and take something we don't need?

[shaws in reply to Jojozo]

Well seen they are poorly trained and are unaware that levo has to convert to T3. Levothyroxine is inactive and does nothing in our body until it converts to T3 and therefore we have to have an optimum dose and some of us cannot convert synthetic levo into the Active T3. If we could we would not be on this forum.

thyroiduk.org.uk/tuk/about_...

[shaws in reply to Jojozo]

ps One of our Advisers and his team of Researchers have proven that many need a T4/T3 combination.

[Jojozo in reply to shaws]

Thank you Shaws. Sometimes I feel like I'm going mad or being a bit dramatic about needing T3 because doctors always question it and slam any advice I've been given about it. I even asked the doctor (very politely) yesterday if the reason GPs are so skeptical about T3 is because the NHS are unable to prescribe it and he effectively ignored me!

[shaws in reply to Jojozo]

I think many disbelieve us. However, people who join forums like this one find out there is more than one thyroid hormone replacement and if they dont feel well on what they are taking at present and hasn't improve their health they want to know the reason why.

Endocrinologists seem to not to be given an option of trialling other thyroid hormones. They used to have that freedom but no longer.

[Jojozo in reply to shaws]

It's such a shame. I guess this is why we have to try and do it for ourselves? Thank goodness for forums like this and the kind people who help and offer advice!

[swalls48 in reply to Jojozo]

don't be too hard on doctors my friend. our understanding of these treatment complexities is advancing rapidly and many doctors have not been trained in this information. if you have been reasonable in explaining your point and they were unreceptive then find a doctor that will listen. be patient and careful not to hit a doc with all this at once....they tend to shutdown if you are overbearing. don't be scared to try out a younger doc. it is generally easier to command their respect and they are less bound to outdated doctrine.

[Jojozo in reply to swalls48]

Don't get me wrong, I appreciate doctors so much and there are so many great ones out there who have helped me with other medical problems, but I feel like I've been trying to get this one sorted out for so many years and I've got nowhere. I ended up having to spend over £3000 to see a private doctor in the end and now I can't afford to go back I feel really stuck. The GP I saw yesterday was a young guy and very nice but he shut down every attempt I made to discuss alternative treatments/T3. I certainly wasn't overbearing with him - quite the opposite - but he dismissed my questions and he even said 'let's treat the urine infection for now and deal with this another time' as if it wasn't important. I know they're under a lot of pressure but I feel really frustrated at the moment.

[swalls48 in reply to Jojozo]

wow! that is an incredibly expensive endeavor. i am in the States so I enjoy the freedom of telling my doctor to 'F' off if I don't like their attitude towards my concerns. it is certainly a great freedom to have. don't take me the wrong way! i completely understand your frustration and have been there myself. it is tough not to lose your wits when your feeling crummy on top of having your inquiries disrespected.

[Jojozo in reply to swalls48]

I love the sound of that freedom! We are unbelievably lucky to have the NHS over here and I think the world of them but sadly I think there are a lot of sticking points with thyroid problems, hence I went private and bankrupted myself! Once I’m feeling better I’m going in search of a millionaire...

[Hidden in reply to Jojozo]

What medical school did this doctor attend? Taking away T3 is not going to cause the body to up its conversion rate. People who are poor converters of T4 to T3 have a problem whose root cause is not remedied by taking away T3. irina

[Jojozo in reply to Hidden]

Thank you. Instinctively it didn't ring true to me either, but of course I'm not an expert so I couldn't be sure! I always end up feeling like doctors think I'm being a pain and making things more difficult than they need to be and that I should just stick to the T4 and be done with it. The problem is, I don't feel good on that alone.

[Hidden in reply to Jojozo]

You are NOT a pain. You are a patient asking for the correct care to feel better. Doctors can be difficult and intimidating. If you can, consider taking someone with you that will help you go to bat for yourself. I do this sometimes when I am worn out from fighting and I have no problems usually standing up and squaring off with recalcltrant caregivers. His opinion is just his opinion and remind yourself that opinions are like @$%holes. Every has one! Take care. irina

[Jojozo in reply to Hidden]

Haha, I love that! Thanks Irina!

[Hidden in reply to Jojozo]

🐱

[Hidden in reply to Jojozo]

Hi jojozo. And remember it's not necessary to have letters after your name to be an expert. There are many experts on this site whose qualifications come from experience, reading, motivation to learn. Soon you will be an expert because you will have more thyroid knowledge than many of the doctors you will see.

[Jojozo in reply to Hidden]

Thanks Irina!

[Hidden in reply to Jojozo]

👍

[greygoose]

Are the ranges always the same as those at the bottom?

Do you have Hashi's?

I don't know why you say your FT3 has always been the same because that seems to go up and down, too. And is often over-range. As is your FT4. But, I can't see any evidence of poor conversion. Although, I have to say, I find results spread out like that, very hard to read.

[Jojozo]

Hi GG, I do have hashi's and yes, the ranges are always the same. I don't think I did say my FT3 has always been the same in the post above, but my TSH has been around the same level for years and doctors have told me it's suppressed. I'm just unsure whether I need to lower my dose of T4/continue taking T3. I'm at a loss as to what to do for the best.

[swalls48 in reply to Jojozo]

very interested in goose's response regarding conversion. he is very knowledgeable. i haven't experienced this myself yet so i find his advice much more valuable than my own.

[Jojozo in reply to swalls48]

Me too. GG gave name some great advice a few years ago so fingers crossed.

[greygoose in reply to Jojozo]

You said :

I’ve attached the results of my last 17 tests (thorough!) which shows that my T4 is consistently high and my TSH is consistently low. During this time my T4 dose has been up and down but my T3 has remained the same.

I don't think that GP has much idea what he's talking about.

the GP I saw said that the reason my TSH level is suppressed is because my T4 level is high, and that’s what’s making me ill because the TSH is what tells my brain to make the thyroid work.

Actually, it's the pituitary - not the whole brain - that makes TSH which tells the thyroid to make hormone. But, he's totally missing the point that even if your TSH was telling your thyroid to make more hormone, your thyroid is not capable of responding, which is why you're taking thyroid hormone replacement in the first place.

Yes, the high FT4 is affecting the TSH, but it's the T3 that has the most influence on it. Yes, the TSH promotes conversion, but as you're taking T3, you don't need to convert - presumably you can't anyway, even with a higher TSH - so the TSH is superfluous to needs. That is not what is making you ill. However, looking at some of your results, it could well be that you're taking a bit too much T3. How much T3, are you taking? Have you been on the same dose for all of those results? We really do need that information along with the results and ranges. I always say we need all the numbers : results and ranges, dates and doses, to get a complete picture.

Of course, it is possible that it is your Hashi's that is causing your results to vary like that. But, normally, there is a correspondance in the numbers - both T4 and T3 tend to go high at the same time. We can't see that with your results. The high FT4 and the high FT3 don't always correspond.

But, one thing is certain, if you can't convert well, then you do need T3 to make you well. And, I think, the only reason he wouldn't discuss it with you is because he doesn't have the in-depth knowledge to discuss it intelligently. So, I would just ignore him, if I were you.

[swalls48 in reply to greygoose]

well spoken

[greygoose in reply to swalls48]

Thank you.

[Jojozo in reply to greygoose]

Thank you so, so much. This is so helpful. This is more information than I've got from the endocrinologists I've been seeing for the past few years and it makes a lot more sense! I realize they don't have a lot of time and resources via the NHS and they work within strict rules but I'm glad I've followed my instincts overall. The endocrinologists have taken me off T3 twice over the past few years but I put myself back on it because I felt awful without it.

I've been taking 12.5mcg of T3 for the past four years or so but I'm currently out of it and awaiting a delivery.

I've been advised to lower my thyroxine to 100mg and I would be very happy to lower my T3 too, but maybe I should do that at different times so I can tell what's having an effect on me?

Thank you again.

[Jojozo in reply to Jojozo]

Also, apologies, I meant that my T3 dose has remained the same, which I didn't make clear.

[greygoose in reply to Jojozo]

That makes much more sense!

[greygoose in reply to Jojozo]

You should only reduce one thing at a time. If I were you, I would reduce the levo first. Wait six weeks and retest. See if that has any effect on your FT3. Then you can decide what to do with your T3 dose, which really isn't very high.

[Jojozo in reply to greygoose]

Wonderful, thank you again! It's hugely appreciated.

[Hidden in reply to Jojozo]

Good idea. It's always a good idea to make one med change at a time so we know what med is doing what.

[SlowDragon Administrator]

Do you have recent blood test results and ranges for vitamin D, folate, ferritin and B12?

What supplements do you take?

Are you on strictly gluten free diet or tried it?

Do you always have same brand of Levo and same brand of T3?

[Ari3 in reply to SlowDragon]

Where to buy gluten free spices please ?

[Jojozo]

Hi SlowDragon, I don't have any recent results to hand sadly (I could ask my medical practice for them. They are very good) but I know that my B12 levels often come up high. I take a wide range of supplements including selenium, D, multi-vitamins, HCI & Pepsin and Pro Easy probiotics for my gut. I get a lot of gut problems and usually when I get ill it starts there and then travels to my head, which is when the sinusitis kicks in.

I take Leveothyroxine, which the NHS provide, and I've been taking Cytomel (which says Liothyronine Sodium on the packet?!) and I've just ordered a new brand of the same product.

I am gluten free on the whole and I keep reading about what a huge difference this can make so I clearly need to be stricter and not get lured in by the bread rolls when I'm at a barbecue (which, to be fair, is usually only twice a year!). Does being GF have a really big impact? I've been wondering about milk too. I only have one latte a day but I've considered cutting that out too.

[marigold22]

Have you considered ditching the T4 med and only taking T3? Your story is very similar to mine ie Feeling worse after 20+ years, have seen a private doctor who said you can't convert T4 into the usable thyroid hormone T3, GPs & endo's not liking that a private doctor prescribed T3.

I know this involves spending a bit more money (around £170?) , but doing the private gene test DI02 (three letters, one number) was a massive turning point for me. It proved in black & white that my body cannot convert T4 into T3 due to a faulty thyroid gene. I used Regenerus who were very helpful. regeneruslabs.com/

You're still only on (I think) 25mcg of T3 a day. So perhaps that's all your body is receiving? Your symptoms you list - - sore throat, achey limbs, fatigue, low mood, anxiety, grumpy, confusion, dizziness, headaches, sinusitis, temperature changes and lower abdomen/stomach pain, are all the symptoms I had when undermedicated, either on T4 only or a very low dose of T3 only.