Test results

[RedOne1]

Hello.

These results are my mums. GP prescribed 25mg levo for 28 days. They haven't carried on with prescription and these results came back as 'normal'.

Any help would be appreciated, thank you 😊

[Forestgarden]

Hi there, are these the results after being on levo for 28 days?

[RedOne1 in reply to Forestgarden]

Hello. yes they are after the 28 day prescription

[FallingInReverse]

Can you provide more information?

Some of those results might be in range, but they clearly show her thyroid is struggling. That being said, the NHS’s thresholds for needing treatment are very misaligned to the results that will correlate to symptoms.

But the TSH is not even in their range - so how can they say “normal” even by their standards.

I have never heard of a 28 day course of Levo 25 mcgs as a standard treatment… clinically that’s not how Levo works, but even by NHS standards - can other UK folks here make any sense out of that?

But equally important, please tell us how your mom feels, and more about her health overall.

[RedOne1 in reply to FallingInReverse]

Hi, yes it is a strange thing to just prescribe 28 days and then not be offered even a follow up appt! My mum went to the doctor initially because she wanted to go back on HRT. Has very bad hot flushes, tired a lot, disturbed sleep pattern, hair loss. GP wouldn't prescribe HRT due to age (mid 70s) and said her symptoms may be thyroid and to try the tablets for a month.

My mum hasn't even heard back from GP so I asked her to check NHS app and it says normal result.

[Jaydee1507 Administrator in reply to RedOne1]

Every prescription is just for 28 days. She probably just needs to ask for a repeat presription.

Testing after 28 days is a waste as it takes 6-8 weeks for levels to stabilise. She should have got a repeat prescription and continued for 6-8 weeks before repeating blood test.

Your GP won't be chasing her. She needs to take responsibility and phone the GP practice and if a dose increase is required then ask for it.

She should ask her GP for the vitamin tests ferritin, folate, B12 & D3 also. When you have the results make a new post with them.

You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)?

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

[RedOne1 in reply to Jaydee1507]

Thank you. Will ask for repeat and other bloods done. What would we do without forums like this!

[greygoose]

But her TSH is 7.04. And the top of the range is 5.5. How is that normal? It isn't even in-range. And does he really think that 25 mcg levo daily for 28 days cures hypo? It's a life-long condition and requires levo - or something else - for life. Are you sure it was a doctor she saw and not the window cleaner?

[Kowbie in reply to greygoose]

Oh you do give me a laugh greygoose

[greygoose in reply to Kowbie]

Glad to hear it.

[FallingInReverse]

Is she diagnosed as hypothyroid?

Or were appointments always about HRT?

Can you share her blood test results prior to the 28 days of Levo?

And I don’t suppose she’s ever had thyroid antibodies tested? If so, please share those results.

[RedOne1 in reply to FallingInReverse]

Not diagnosed, just started treatment from symptoms. It was after a phone consultation and unfortunately we don't have any test results from before she started them so no accurate picture!

[FallingInReverse in reply to RedOne1]

Wow. Nothing surprises me anymore but this one… surprises me!

They threw some Levo at your mom WITHOUT A BLOOD TEST?

For those of us on Levo, when we start it change a dose we say to wait 6-8 weeks on the same dose. Because hormones take that long to settle in your bloods. When people here say they test at 4 weeks after a new dose, we generally try not to make any conclusions about exactly what is going on.

A few things that are likely - her TSH would have been higher 4 weeks ago. And that is definitely too high. Her body is struggling to have enough thyroid hormones. It’s also likely that her FT4 was that or lower 4 weeks ago. And that level is too low to feel well.

On the other hand, her FT3 is not as low as I would expect. But also - at 4 weeks on 25 Levo… I don’t know what we could guess about what her FT3 was 4 weeks ago.

Bottom line, if your mom wants to tackle this, then you will need to figure out your best approach to the NHS and/or private blood testing. But her thyroid numbers are not normal.

[TiggerMe Ambassador]

I expect she is feeling pretty shonky and they need to increase her dose by another 25mcg or she is going to start to feel a whole lot worse, what on earth are they messing about at?.... have they run any tests for folate, ferritin, B12 and Vit D also anti bodies?

[FallingInReverse in reply to TiggerMe]

TiggerMe , the OP isn’t even able to ask for an “increase” as the prescription was for 28 days only! And the prescription was given after a phone conversation without a blood test! And the above blood test is after 4 weeks only on a measly 25.

Obviously TSH and FT4 are too low - knowing nothing else, is a starter of Levo 50 the absolute course?

Should other blood blood tests be done before a new Levo treatment is kicked off? What do you make of the relatively higher FT3?

[TiggerMe Ambassador in reply to FallingInReverse]

All prescriptions over here are for 28 days, I'm guessing your system in America is rather different?

Why isn't she able to ask for an increase? She very definitely needs the script re-instated! They started her on a course and then pulled the rug from under her when she is very obviously hypo... her high TSH and fT3 are because her thyroid is struggling like mad to keep her functioning so creates more fT3, low fT4 is not unusual.... giving a small dose of levo will only have made this worse!

She is dealing with an idiot GP and needs to tell him what to do or swap pretty quickly... seems odd that he recognised the symptoms well enough to start her yet doesn't understand the blood test results 😲

[Jaydee1507 Administrator in reply to FallingInReverse]

All UK prescriptions are for only 28 days. The idea is that you then ask for a repeat.

Once you have blood test results its the patients responsibility to contact the GP and ask for an increase if one is needed. No GP has the time to follow up every blood test unless they are glaringly out of range.

I'm pretty certain there will have been a blood test initially that triggered the prescription for Levothyroxine, just the OP doesn't have that result.

If someone hasn't used their GP service regularly or for a chronic condition they may not be aware of how to get the best out of the service.

[FallingInReverse in reply to Jaydee1507]

Thanks TiggerMe and Jaydee1507 !

That makes more sense the way you put it regarding the 28 days.

So… do they not come with a certain number of “refills”. Is there something automated about getting subsequent months, or do each of you have to follow every 28 days?

And that also makes more sense that there would have been a blood test, maybe it was only the prescription that was given over a phone consult.

Eeyore, thanks for the FT3 answer too!

RedOne1 the above is why I noted that the other UK folks on this board will be great help to you and navigating the NHS!

[Jaydee1507 Administrator in reply to FallingInReverse]

No refills in the UK on the NHS. We get prescriptions for 28 daysand then need to request a repeat.

A lot of consultations are done over the phone since covid times. Sometimes you are called in for a face to face but this is variable and doesn't always happen.

[RedOne1]

Thank you everyone for your replies. I feel bad that I wasn't more clued up on what's needed. So I really appreciate you taking the time to help x

[RedOne1]

I will make a list of what blood tests are needed so we can go back to the doc and maybe try start again after a full blood panel

[FallingInReverse]

A long list for reference.

Antibodies: These should be tested once, and they do rule in autoimmune cause if positive results. If they are negative, they don’t mean you don’t have thyroid issues. I have seen that many people have trouble getting the NHS to do these.

Confirm Hypo (under active)

1) TPOab

2) TGab

Confirm Graves (over active)

1) TRab

2) TSI

A compete picture of thyroid health:

1) TSH

2) Free T3

3) Free T4

Plus these vitamins

4) ferritin

5) folate

6) B12

7) D3

There are blood test protocols basically fast, if on Levo, leave 24 hours between dose, and test as close to 9 am as possible (which gives the highest TSH which gives you the best chance of the NHS diagnosing).

if you can’t get any of these from the NHS, people on this board can give advice for private testing.

[RedOne1 in reply to FallingInReverse]

Perfect, thank you very much 😊

[FallingInReverse in reply to RedOne1]

The NHS has incredibly high thresholds for diagnosing and thus treating thyroid issues.

There are two prongs to taking control of the situation.

One, you need to understand it yourself. Sometimes people have luck getting those tests from the NHS, but not often. So there is usually some level of private testing.

Two, you have to navigate the NHS, where your gp/endo will either be a help or an obstacle. I would start the process for getting the appointments she needs with the NHS. Then, the more knowledgeable and confident you are, the better chance you have of getting what your mom needs in as timely as possible.

Let us know how it goes and if you need any other opinions from us!

[RedOne1 in reply to FallingInReverse]

Great advice, thank you.

My mum is going to make an appt and ask for the recommended blood tests and we'll take it from there ❤️

[FallingInReverse in reply to RedOne1]

As noted above with Eeyore and Jaydee’s notes - it looks like you have a path to call the doctor and ask for an increase to 50 mcgs Levo. Take a look at their replies.

[RedOne1 in reply to FallingInReverse]

Thank you. Its much clearer now and makes me wonder why I didn't figure this out myself haha. I have enough experience with GPs and repeat prescriptions! I blame it on the brain fog 🤦‍♀️

Very happy we have a plan now though thanks to everyone's help x

[J972 in reply to RedOne1]

Good luck and, as fallinginreverse says, post an update 🙏

[J972 in reply to FallingInReverse]

The NHS has incredibly high thresholds for diagnosing and thus treating thyroid issues.

You have such a knack for summarising the NHS’s inadequate diagnostic protocol! Which is made even more surprising given that you’re in the States! Perhaps that’s why?!?

Out of curiosity, is the threshold for diagnosis different over there?

[FallingInReverse in reply to J972]

LOL! In my opinion and experience, doctors have a lot more discretion to diagnose and treat. I don’t know what the threshold would be, nor what single document or authority would define a threshold. We have the FDA - the regulatory body that governs drug safety. The FDA defines what the drugs are designed and tested for. But doctors can even work around that when a patient needs something. This discretion is great. But also leaves doctors wide open for lawsuits… medical malpractice.

Part of it comes down to the fact that the cost of diagnosing and treating is shared by the patient.

So for you guys it’s hard to get diagnosed, but once you are everything is paid for. For us they diagnose, and sometimes the treatment cost is out of reach.

The longer conversation is around who pays and how much. Too long to get into here.

Ps. The lack of understanding and training among doctors when it comes to thyroid - in my experience- is shared among us all! The big difference for me is that my doctor will take my input in my prescriptions, the other difference is I do pay a little bit for each appointment or blood test. It’s all trade offs!

[J972 in reply to FallingInReverse]

Interesting to have that insight, thanks for sharing 👌

[waveylines]

Hmmm seems to me that her GP put the cart before the horse. What shouldve happened is that the GP on the phone shouldve ordered blood tests BEFORE starting treatment. Now they've done them four weeks after taking levothyroxine. It all seems back to front to me. I'd say 'see' another doctor but it all depends who you get these days! Certainly no choice. Was it a trainee GP?

How long ago since the levothyroxine finished was the blood tests done?

Honestly it's a shambles. If possible I'd try to be with her on the next phone call it doesnt seem at all right. I'd point out that the blood test was done after they'd stopped levothyroxine and demonstrate her thyroid is struggling and had they'd been done before starting treatment the blood tests results would've been even worse. More to the point the blood test results shows she needs an increase.

I've just changed my GPs because they failed to submit a fast track for suspicion of cancer that another GP sent to them (out of hours). When I followed up a month later with the hospital I found out it hadnt been sent it!! So you can't rely on GPs for anything these days. It was the last straw in a series of bungles.

So you will need to follow everything up and if your Mum finds it hard to be heard on her own then a second presence may help.

[Sweeneythyca]

The results are illustrating a need for more thyroid hormone. The Thyroid stimulating hormone (TSH) is indicating that there isn't enough T4.... for whatever reason (thyroid disease etc) her thyroid isn't producing hormone so for sure she needs more levothyroxine to lower the TSH and bring the T4-and consequently the T3 higher in the range.

[Carlosdoug]

Hi red one1 , I suggest your mother has a look at Dr.Louise Newson menopause site. There is no reason your mother can’t have HRT because of her age. Good luck.

[FancyPants54]

I'm stunned at the thyroid treatment your mum has received. Terrible. But you have good answers on that below. Did the doctor test her thyroid levels before putting her on the 25mcg Levo? If so, what were those results like?

But I want to say that there is no reason why your mum can't go back on HRT. But she's probably going to need to see a private specialist to start her off and write to her doctor for her. Something like the Newson Clinic. Other options are available too. At Newson, the oldest patient to start HRT was a lady who treated herself to a consultation for her 90th birthday.

[Singwell]

Oh yikes I sound so rude when you put it like that. Huge apologies RedOne1 obviously needed my brekkie

[StillEverHopeful]

I'm not going to add to the great advice, but on a more practical level if your mum needs you to go 'into bat on her behalf' it would be good for her to complete a form at the GP surgery that gives you permission to talk to staff on her behalf.

I have already completed one of these forms giving permission for my husband and adult son to speak to them on my behalf....I don't need it, but should anything happen to me even if it's just losing my voice so I can't speak I know they can speak on my behalf. (I had a problem a couple of years ago where I asked my husband to sort out rearranging my GP appointment and they refused as I had not given consent for him to do this)

I hope your mum will recieve the proper thyroid care she needs promptly and how wonderful she has your support in this.

edited for clarity