THS in reference range but no improvement

[Nokotan]

Hello,

I’ve been dealing with thyroid issues for about six years. My symptoms started before I turned 20, and only this year have doctors prescribed me 50 mg of levothyroxine. I know it can take a long time to notice a difference, but I don’t feel like it’s working. The fatigue is the worst part. Even basic tasks, like writing or reading, feel challenging. I may look healthy on the outside, but I’m really struggling inside. Fortunately, my closest people understand, which makes life easier, but it’s painful to live in a body that feels this way.

My recent TSH test came back at 4.26 mIU/L, which falls within the standard range. According to my GP, this is considered healthy. However, over the years, I’ve noticed my TSH fluctuates. That’s why it took until this year for me to finally get treatment. Still, none of the GPs seem to acknowledge a deeper issue. My TPO antibodies are positive, and an ENT scan in 2021 showed a nodule, diagnosed as revolving thyroiditis due to fluctuating TSH levels.

I also have a family history of thyroid issues, which is the main reason I pushed the doctors to investigate further. Before this, I was diagnosed with chronic fatigue because another doctor couldn’t find anything conclusive. T3 and T4 tests aren’t done frequently by my GP, but on the few occasions they were, my results were within range, though T4 was on the lower end and T3 slightly higher. I’m not sure if that means anything.

Considering all my symptoms and test results, I’m convinced my thyroid is the issue. But no matter how many GPs I see, referrals to an endocrinologist keep getting refused. I’m thinking about seeing a private specialist, but I’m hesitant because I don’t want to lose my savings to get no where.

Has anyone been in a similar situation? I don’t know what to do when GP refuses to adjust the dosage because my TSH is in the reference range. I’ve tried looking into other causes for my symptoms, but everything seems to point to Hashimoto’s. I’ve been prescribed levothyroxine, but I don’t think I’ve ever received an official diagnosis. Is this normal with GPs? Is there really nothing more that can be done?

[Sparklingsunshine]

I'm afraid you've fallen afoul of the " TSH in range" GP fallacy. 50mcg is only the starter dose and with a TSH of 4.26 you are long over due the next dose increase to 75mcg. Unfortunately many GP's are shockingly bad at treating thyroid.

They assume that anywhere within range is good enough. When hypo your TSH should be around 1 or even lower. Obviously if they dont test FT4 or FT3 ( thanks NHS cutbacks) you have no idea what they are doing, they are more important than TSH anyway.

If you have Hashimoto's or more commonly called autoimmune thyroid disease then it can cause your TSH to hop around a bit, hence why you found it difficult to get diagnosed. You really need the next dose increase and any half decent GP should know this.

[Nokotan in reply to Sparklingsunshine]

Agree, GPs often don’t really listen, and sometimes it feels like they think they know better just because they’ve studied. Thyroid issues seem to vary from person to person it’s not like one size fits all. Maybe doctors have to strictly follow the guidelines or they find this topic borong.

[Sparklingsunshine in reply to Nokotan]

Umm they spend one afternoon during med school on the endocrine system, of which the thyroid is just one part. So they probably know far less than us who actually have he condition. Unfortunately the fact this forum is so busy is testament to the fact they often get it wrong and let patients down. Even most Endos are diabetes specialists, not thyroid.

[Nokotan in reply to Sparklingsunshine]

I really don’t know what to do. Do you think there’s anything I can do to get my GP to increase the dose, or am I doomed?

[Sparklingsunshine in reply to Nokotan]

GP says " I have to reduce your dose/ cant increase it because the guidelines say I can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

In other words you still have symptoms, your TSH is too high, your GP should take ongoing symptoms into account, not just blood tests. They should offer an increase to 75mcg.

The guidelines are just that, guidelines, not hard and fast rules. You should print that off and show them and tell them you still feel rubbish and your TSH is too high for someone on Levothyroxine. It should be nearer 1, some of us need it even lower. Could you see a different GP in the practice?

[Nokotan in reply to Sparklingsunshine]

Maybe I could see what another GP has to say. Have to wait for Monday to book the appointment. Thanks for advising.

[Agitator23 in reply to Nokotan]

If I were you, I'd start getting private blood tests so you can see your fT4 and fT3 levels. I built a picture up over time to argue my case with my GP (see my biog). I was always within range for TSH but was hypothyroid with classic symptoms.

[Insomania]

They’re keeping you ill 😢

I’m reading the book Your Thyroid & How to keep it healthy by Barry Durrant-Peatfield for a second time. Well worth a read.

[Nokotan in reply to Insomania]

Thank you, I will check this out.

[Sunflower535]

I can't offer any advice but what I can say is that I am going through the same issue with my GP. I have spoken to two different ones and they just don't want to know. Asked me this week if I felt suicidal. 🤔Every question they asked me was trying to point my tiredness and muscle aches to depression which I know I don't have. Like you I'm only on 50mg of levothyroxine. I do hope you get some help soon.

[Sparklingsunshine in reply to Sunflower535]

Too many patients are given 25mcg or 50mcg and then hallelujah their TSH falls into the range and they are "cured". It happened to me as well, I was diagnosed during Covid so my care was for obvious reasons not what it should have been and I was left for over a year on 50mcg.

I had one blood test and it was in range, around 4 something ( I wasn't a member of the forum at the time so didn't know any better). It wasn't until I had my review the following year that my TSH had gone over range again and I needed to increase.

Its not good enough, hypo is a common condition and this stuff isn't rocket science. But GP's get very little training in how to manage thyroid conditions effectively. And a lot lack the humility to acknowledge that.

[Nokotan in reply to Sunflower535]

In early days of this journey my GP hinted that maybe it’s depression. It took years of seeing different doctors to convince them that something was wrong with my thyroid. It feels like they run all these tests but can’t connect everything to see the bigger picture. It’s as if they’re programmed to read the results, say something is abnormal but expected, and then do nothing. And if the results are within range, they assume everything is fine.

I think the reference range is high because many older people are diagnosed with thyroid issues, and their levels can be higher before they start experiencing symptoms. But not everyone is 80 years old. Is a problem with the system.

We are just left on ur own with no choice but keep pushing through. But ultimately GP can only treat the condition. They could easily give a trail dose increase which it’s probably less harm than keeping untreated.

[Nokotan in reply to Nokotan]

Only if they read forums with real people experience not statistics.

[whCorona78]

Hello. You really need to get a T4 and T3 test done with the TSH to get a basic picture of where things stand. If you can't get it covered by the system, use some of your savings to private pay for the tests. After the results return, discuss it with your GP. If need be, you might be referred to a Endo specialist.

[Nokotan in reply to whCorona78]

I’ve already done all of that, but the endocrinologists here still don’t want to see me. Even with the ENT’s recommendation and all the blood tests I’ve had, they either suggest more tests or say it’s not worth waiting this long in the queue. For some reason doctors avoid Thyroid related stuff.

[arTistapple]

Don’t waste your money going private until you know more about your treatment/experience/expectations.

I really wanted someone else to ‘take charge’ but really it’s better if we know what’s going on!

There is a fair bit to understand on this journey and it’s not all about ourselves. Treatment for hypothyroidism is strewn with, if not bad intentions, it’s certainly a lot of downright ignorance.

[Nokotan in reply to arTistapple]

The thyroid affects the immune system, and issues like poor vitamin absorption and other abnormalities are part of that. GPs often ignore these clues. The reason I’m considering seeing a private endocrinologist is to have someone connect all the dots. But there’s no way to know if that particular doctor will be knowledgeable and honest. Some claim to have years of experience, but in reality, they know less than the people actually living with the condition.

Personally, I wonder if it has something to do with how my body is converting T4. It’s a complicated topic to understand, and none of the GPs I’ve seen have been able to help with this.

Sometimes to solve the problem is about finding the actual cause. In 6 years haven’t found that yet.

[Tina_Maria in reply to Nokotan]

If you are considering a private endocrinologist, I would contact thyroid UK and ask them to give you a list of thyroid friendly endocrinologists - at least then you may have a better chance to get someone that perhaps does listen to you.

Do you have the actual print outs of your thyroid tests or know your results with the reference ranges (TSH, T4 T3)? If you post them here, folks can have a closer look. In general (but might not be the case for everyone) people feel better when the TSH is around 1 or even under, and T3 and T4 are between 60-75% through the range. If your T4 is high in range but the T3 quite low in comparison, this could point to a conversion issue.

[Nokotan in reply to Tina_Maria]

My latest THS from September is THS 4.26miu/L [0.38-5.33] <Reference range

I did requested to test T4 on June 10.8pmol/L [8-17]

No T3 test at least not when I was taking 50mg

In march I was on 25mg

THS 6.86miu/L

T4 9.8pmol/L

T3 5.9pmol/L [3.8-6]

This is where I’m a bit confused because T3 seems a bit leaning towards higher end. Before levothyroxine treatment T4 was low but T3 was at 6.6

Should I make a separate post about this?

[Sparklingsunshine in reply to Nokotan]

Probably a good idea, it will be seen by more people that way.

[Tina_Maria in reply to Nokotan]

Your TSH is too high for someone on thyroxine replacement and T4 is very low (only 31% through range). This would indicate that you are under-treated (50mcg still a low dose - generally people need a replacement level of 1.6mcg levo per kg of weight, some might need more, some are okay with less).

Your T3 in March was 95% through the range but still within the limits. This could have a number of reasons, difficult to say what it could be, perhaps you had a 'hyper' swing, when your thyroid chucks out more T3 hormones? Or did you have an infection at the time, as this may also influence thyroid hormone levels? If you can, could you perhaps repeat the blood tests and include TSH, T4 and T3 to see if the T3 is till high - it might be that the T3 has come down now (would tie in with the low T4 and you feeling tired and exhausted), if not that could be something to discuss with the endocrinologist?

A separate post with the numbers and reference ranges might be a good idea to get some other opinions or suggestions.

[arTistapple in reply to Nokotan]

“Have someone connect the dots”. If only.