Feeling ill and despondent.

[BlueDaisy22]

Have had my GP appointment to discuss my results. Feeling more lost now.She agreed to trial of 25 mcg levo as 2 results over 5 , 3 months apart. I asked for vencamil she said they just did generic.

I had asked for 50mcg but she said would ask endo for advice if I could have that .Also ask them whether I could have US scan to check for atrophy, also if I could have thyroglibulin antibodies tested.(Because I had asked for these).

Anyway I agreed to 25 mcg as feeling very ill and wanted to start something and not wait for a response from endocrinologists.

She also said that I was ONLY JUST OUT OF RANGE with my results as my baseline tsh was around 4 and had been since 2017. Indeed I did have tsh of 4.6 in 2017 then 4.67 may 22, 4.68 Jul 23, 6.2 Oct 24, and 5.55 Jan 25. Only ever had Ft4 and ft3 done Jan 25.

TSH 5.55 , (0.35-4.94)(113.3%)

FT4 9.7 (9.01-19.05)(6.9%)

FT3 (2.63-5.7)(3.4%)

When she said I was only slightly out of range I did say that I felt terrible and listed all my symptoms. She did not really take it on board.

Could she be right and nothing much wrong with thyroid? Feeling ill due to something else, or could my thyroid have begun struggling in 2017?

Anyway when I got my prescription home really upset to find inside the box was Teva which I had tried to avoid (forgot about the hillcross box being the same when I looked in pharmacy.) Felt really stupid as know I had read that warning on here. Then promptly forgotten it.

Now really don't know what to do.

Scared about trying teva and not knowing if any reactions are to levo as new to my system or reaction to excipients.

Scared about 25mcg being too little and making me feel worse.

Upset that GP did not recognise how poorly I feel. When I looked up my consultation on my app it says one word 'Tired'.

Should I give the teva a go do you think?

My brain feels really foggy today. I hope this makes sense.

[SlowDragon Administrator]

Yes suggest you start on Teva

Some people find it’s by far the best

Retest in 6-8 weeks and assuming results show need, push for next increase to 50mcg daily

[BlueDaisy22 in reply to SlowDragon]

Thank you for replying so fast. I'm just feeling very indecisive and a bit all over the place.

[HandS]

Hi, I had no issues at all with Teva: I suggest you try it. Everyone is different and remember that no-one reports “not having a problem”, so only reading the bad experiences of people in the Group may give a disproportionate overall picture.

‘Tired’ is recognised as dominant symptom of being hypo and while it feels like an insult, it’s enough to start your referral. Your GP is heavily constrained by NHS pathways and protocols and not taking your prescription at this stage will likely make it harder to get further investigations .

I wish you the very best

[BlueDaisy22 in reply to HandS]

Thank you. That is very reassuring.

[HandS in reply to BlueDaisy22]

Nothing happens fast enough when dealing with thyroid issues😐. My TSH was 27 when I first started to get treatment and I had been very ill for a long time. I’m sure you can imagine just how ill I had become. My GP did start me on Levo but it took 2 years before I saw an Endo which I paid foe privately in the end. I now see an NHS Endo who I really like but it’s been a long journey.

But I also know many people who do just fine on their GP prescribing.

I know it’s daunting and worrying buy you can safely start on the first step😊

Looking forward to hearing how you get on.

[BlueDaisy22 in reply to HandS]

I certainly got a glimpse of -how slow things can go-today! Glad you have now found a doctor you like. Fingers crossed for going forwards.

[Obsdian in reply to BlueDaisy22]

I also take Teva with no issues.

[BlueDaisy22 in reply to Obsdian]

Thank you🙂

[DippyDame]

Their ignorance and lack of confidence in using thyroid hormones is beyond me. It is causing so much suffering.

Your levels are appallingly low no wonder you feel unwell.

Yes, give Teva a go though I doubt 25mcg will do anything other than make you feel as bad or worse.

The dose replaces what you have in your system and that could be more than 25mcg......so you need more

We have to speak up for ourselves and educate these clowns about reference ranges...and much more.

We aim to have both Frees sitting roughly 75% through their ref ranges.....look at your %ages!!

I would have another go at this doctor....or see someone else....you need more than 25mcg T4. Your thyroid is struggling and by your labs been doing so for some time. An underactive thyroid is clearly your problem!

The ref range is just a guide....just being in or out of range isn't good enough. You need to have results which cause you to feel well.....as you will do on the correct dose. And that is likely to be approaching 75 or 100mcg.

Your GP should be knowledgeable enough and confident enough to titrate your dose withought referring to an endo.....asking an endo for advice at this stage is rediculous!

You should be able to have both TPO and Tg tests carried out too.

"Tired" doesn't begin to describe your symptoms....that is lazy doctoring!

Push for 50mcg

Good luck!

[BlueDaisy22 in reply to DippyDame]

Thank you. Straight after GP appointment I started to doubt whether it was thyroid. Thank you for pointing out that those free percentages are low. I don't know why I didn't think to talk about that to her! I am feeling a bit better in my spirits now after hearing from you and this lovely group. 🙂

[DippyDame in reply to BlueDaisy22]

Yes it's important that we support each other....stops us feeling alone with our thyroid issues.

Don't doubt yourself, you know your body better than anyone else!

We're all here to help, just ask!

[JoJoloveschocolate]

I started off on Teva when I was first diagnosed and had no problems with tolerating it at all. Then the pharmacy gave me a different make of levo for a while and I was ok on that too. I’ve just been prescribed Teva again and no issues with it whatsoever. My tsh was only just over the range at diagnosis, but I felt absolutely terrible. My first t4 test was 3% through the range. They described it as a “mildly underperforming thyroid” when I was spending most of my days in bed and had been diagnosed with CFS/ME.

[BlueDaisy22 in reply to JoJoloveschocolate]

Thank you. It is so kind of you to reply. I feel calmer about it all. I am so sorry to hear you had such a low % test and can fully understand you must have felt awful. It does reassure me lots to know that there are similar results to mine. Hoping you are feeling better now. There does seem to be a weird disconnect between what patient feels and what GP understands by that!

[JoJoloveschocolate in reply to BlueDaisy22]

I had symptoms before my tsh went over range. My tpo antibodies were negative, but when I did a home test for thyroid function and antibodies I found that I was positive for TG antibodies so I would never even have known that I had hashimotos if left to the gp. They just didn’t seem to want to properly investigate anything and just said it was CFS and fibromyalgia. It has been up and down, tweaking the doses and having to wait for each increase to settle and see how the t4 and t3 levels are doing. Right now, I am feeling a lot better and many of my symptoms have improved. It might all change again, but I have faith that I’m on the right path. Just keep asking questions here and getting support and advice when you need it. x

[BlueDaisy22 in reply to JoJoloveschocolate]

I am glad you are feeling better. I am definitely going to get a test for the other antibodies at some stage. I think it's helpful to know what you're dealing with. I cannot believe how supportive this group is and thank you for all your advice. I feel much more able to cope than earlier today by loads. X

[JoJoloveschocolate in reply to BlueDaisy22]

Good to hear you feel more able to cope. I’ve had a few days where I’ve felt overwhelmed or confused by it all and come here for advice. It can be an upward climb after being ill for a while.

I found it useful to keep a kind of diary (I use my profile/bio). It has helped me to organise my brain into some kind of understanding of what is happening to me and to keep a track of symptoms, results, doses, how my body responds, plans moving forward. I copy and paste it into a word document every so often so that I have it at hand to refer to or copy/paste parts into anything that asks for medical history.

I also use the “save post” function on here if there are any posts/articles I want to keep to read or refer back to. Sometimes I take a screenshot of any info or advice I’ve been given too. Apologies if you already know this! 🤣

Wishing you all the best xx

[BlueDaisy22 in reply to JoJoloveschocolate]

Tee hee, with tech I only know the bits that I know! So always v happy to learn how to do more. Save post sounds very useful (didn't know!)and never thought of copy and paste to a master document. What a good idea! Have done screen shots before now but then no way of organising them sensibly🤔 Currently have lots of bits of paper with different headings that I add to. But think a more comprehensive chart for symptoms doses etc a good way forward. I am enthused to start off well.🤣

[JoJoloveschocolate in reply to BlueDaisy22]

I always start well…and set myself really small goals ….and then fail to achieve them…then have a glass of Baileys to celebrate 🤣

[BlueDaisy22 in reply to JoJoloveschocolate]

Cheers!😂

[florasmate]

Hi BlueDaisy I really feel for you, I had a very similar experience of failure to diagnose hypothyroidism for 2.5 years until I was finally put on 25 mcg levo two years ago. I was also gaslighted (gaslit??) by being told my symptoms couldn't be thyroid because I wasn't overweight, sigh. I would definitely go with it, it's a start, make sure you get retested in 6 weeks and hopefully the docs will increase the dose. It's taken me til about now to get decent T3 and T4 results, thanks to the fabulous advice on this forum. Keep pushing, wishing you the best of luck x

[BlueDaisy22 in reply to florasmate]

Hello florasmate, the Dr asked me twice if I'd put on weight! Then I told her my long list of other symptoms which didn't seem to be of much interest!! I have resolved to go ahead after all the kind reassurances on here. Best wishes to you too.🙂

[humanbean]

TSH 5.55 , (0.35-4.94)(113.3%)

FT4 9.7 (9.01-19.05)(6.9%)

FT3 (2.63-5.7)(3.4%)

Could she be right and nothing much wrong with thyroid? Feeling ill due to something else, or could my thyroid have begun struggling in 2017?

For the thyroid to work properly you have to be able to produce :

T4 - Which is produced only by the thyroid

T3 - Approx 20% of your supply will come from your thyroid and the remaining 80% comes from various organs e.g. the liver, the intestines by converting T4 to T3.

TSH - This is produced by the pituitary NOT the thyroid.

I am not a doctor but I think your problem is not with your thyroid, but with your pituitary. You aren't producing enough TSH, so your thyroid is getting too little stimulation, and as a result your levels of t4 and T3 are too low. This suggests that you have Secondary Hypothyroidism, rather than the more common Primary Hypothyroidism.

If the thyroid is under-stimulated for a long time it may start to atrophy.

If the problem is with the thyroid the patient has Primary Hypothyroidism.

If the problem is with the pituitary the patient has Secondary Hypothyroidism.

If the problem is with the hypothalamus (which makes the pituitary release TSH) then the patient has Tertiary Hypothyroidism.

If it is realised that the problem is with the pituitary or the hypothalamus but no more precisely than that, then the patient is suffering from Central Hypothyroidism until the pituitary and hypothalamus are tested and the problem is identified properly.

In all these cases the output of T4 and T3 are too low, and the treatment is the same i.e. to replace the missing hormones.

[BlueDaisy22 in reply to humanbean]

Gosh, that is such a clear and concise explanation! That has pulled together lots of half formed thoughts about my state. I had started to doubt everything this morning. This re-affirms for me that starting the levo is a good idea. Thank you so much.

[humanbean in reply to BlueDaisy22]

You're welcome.

[FallingInReverse]

When she said I was only slightly out of range I did say that I felt terrible and listed all my symptoms. She did not really take it on board.

Could she be right and nothing much wrong with thyroid? Feeling ill due to something else, or could my thyroid have begun struggling in 2017?

Just one more quick reply seconding what everyone else has written.

YOU ARE RIGHT! The doctor was dismissive and wrong. Everyone else above has covered the what and why.