Raised temperature, blood tests normal. Hashimoto?

[Karominka]

I am in desperate need of help. I have had a raised temperature 37.2-37.5 the last 4 months and have been feeling sleepy, tired, anxious, I gained weight (3kg the last month), my hair started falling out excessively about 2 weeks ago, I am constantly shivering and cold, but my face feels like it's burning. I gave birth 10months ago. My bloods came back normal. My TSH and T4 were normal. I suspect it could be postpartum thyroiditis or hashimoto. My gp does not see any problem and only suggests trying to relax. Does not want to refer me to check thyroid antibodies. I feel my body is not ok though, I need multiple layers to go out on a warm sunny day and am still shaking. Any suggestions would be appreciated... I have no idea what else to do.

[fuchsia-pink]

Welcome to the forum.

I'm sorry you're feeling so bad. Do you have the actual blood results (and ranges) to post? Lots of times we're told our blood results are "normal", but that isn't the same as "optimal" - sometimes by a long, long way. It's the actual results and ranges that matter [ranges vary from lab to lab so we need these as well to understand your results].

Are you on thyroid medication? Have you had tests beyond TSH and free T4? - ideally you would also have free T3 tested, at the same time as free T4 [T4 is the inactive thyroid hormone, and T3 is the active hormone, needed in every cell in your body]. Thyroid antibodies would confirm whether you have Hashi's; and key nutrients - ferritin, folate, vit D and B12 would be useful to: these need to be good for levo to work properly.

If you have any results, you can edit your post [use the "more" button on the right]. If you don't have the results, you can ask for them, and the GP is legally obliged to give them to you. If you haven't had full testing, and the GP won't do them [most won't] you can get private blood testing - and you will see lots of posts about this on the forum. Medichecks usually have a discount on a Thursday.

Good luck x

[Karominka in reply to fuchsia-pink]

Thank you so much for your reply! I don't have the test results, I did ask for them but they said they're "confidential" and kept pressuring me why I need them. But I will contact the practice again and ask. I also told the gp that the TSH and t4 are usually not enough to see if there's any issue with the thyroid, but she disagreed. I know I need to check the rest though, so I managed to get an appointment for a private blood test but it's in 2 weeks, I couldn't get anything sooner.

Thank you so much for your suggestions. I will update my post once I get the blood test and results. It's so sad we have to fight to even get tests done... surely doctors know that what they do under NHS is not enough. I've been feeling horrendous for so long and only received advice to just relax

[SlowDragon Administrator in reply to Karominka]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

[Karominka in reply to SlowDragon]

SlowDragon, thank you so much for all that information. I will definitely phone tomorrow morning and request the results. I remember I was filling out some forms for online access when registering, so maybe that's it. It would be so much easier than begging them to give me my own results every time...

I've been reading plenty about the thyroid diseases the last few days and just like you mentioned, I would need more than only TSH and T4. I'm not sure why doctors don't understand the complexity of a human's body and that things that appear normal don't always mean that all is good. Also medicine is so developed nowadays, there's so many ways to test, that it's so disappointing when I hear "there's nothing more we can do for you, we suggest you need to relax."

Sorry, needed to rant a bit.

This situation has been a bit stressful for me, something is happening to my body but the doctors won't listen.

2 years ago I had a thyroid scan when I was in Poland, I was told I have areas of fibrosis and to continue testing to see if it's not hashimoto. I never did any more tests, as I went back to the UK and was left with no options. I told this to the gp but they did not even comment.

I hope I get this resolved, I will try and update the post once I collect more information. Thanks again!

[SlowDragon Administrator in reply to Karominka]

UK medics understanding and current treatment of thyroid conditions is unfortunately woeful

First step is to get hold of results

2nd get FULL Thyroid and vitamin testing privately

Come back with new post once you get results

[BrynGlas in reply to Karominka]

Unfortunately many of us on this site have suffered from the difficulty of not being given access to our results when it is legally our right. I just had a receptionist just telling me that my results were normal and that was about 2 weeks after I had had my blood taken and after 2 visits to the surgery as well as regular phone calls.

I googled 'NHS Complaints' and set up a complaint because they had no right to do that or to refuse me a printed copy. A patient surely needs a doctor to tell them whether their results are normal or otherwise, not a receptionist.

Unfortunately Covid 19 came along so the progress of my complaint has been shelved, but I have been assured that it will continue once the virus thing calms down a bit. They were really very nice to me and I felt that I was actually getting somewhere.

The GP and surgery are wrong. They used to be able to deny you access to records but legally, they can't do that and stay within the law. Some GP' s and many receptionists and Practice Managers are drunk with their own power ie 'Jobsworths' by any other name.

I would write them a letter of complaint as well as asking them to provide you with a printed copy your results.

Keep a copy and send in your letter/complaint by SPECIAL DELIVERY, don't use Recorded Delivery, because those letters I have found to my cost cannot always be traced. S. Delivery all the way.

Keep copies, find the NHS England complaint service, send them a copy too, as well as an explanatory letter. Always use Special Delivery.

The GP's and staff know what the law is, they just are not willing to obey it.

Good luck.

[Jtaylorhoo in reply to BrynGlas]

Have you tried downloading the NHSAPP. As long as your surgery registers you with this facility, you can view your results via that.

[helvella Administrator Thyroid UK in reply to Jtaylorhoo]

BrynGlas is not in England.

The NHS App is available now on iOS and Android. To use it you must be aged 13 and over and registered with a GP surgery in England.

nhs.uk/using-the-nhs/nhs-se...

[BrynGlas in reply to helvella]

That's correct, I live in Wales which is why I am bemoaning about the Dark Age health service here.

When I was talking about making complaints about a GP Surgery, I had been staying in Stoke on Trent for most of the last 16 months (family illness) and constantly between November 9th 2019 to March 3rd this year ,when I came home finally.

I couldn't go back there if I wanted to now of course.

I used a local GP for repeat prescriptions and the trouble only started when I wanted my thyroid levels checked early this year.

They told me that because I was a temporary patient I could not access my test results in the same way as a permanent patient would be able to access results. They made every excuse under the sun for not allowing me to get them.

That is why the complaint to NHS England was made.

I had had my blood taken on I think it was 18th February this year. When I returned home on 3rd March I still had not received my results.

My own surgery here in Wales asked me to go in for a blood test again in the same week that I returned home.

I was not happy about that, because of Covid 19 and explained about the test that I had had in Stoke. I gave them contact details for the surgery in Stoke.

They rang the Stoke surgery and asked for the results to be sent electronically, but the Stoke surgery refused saying that they had no obligation to forward results to my own GP here.

My surgery rang me to say that they had been extremely rude and just refused point blank. LoL

When they had received my Special Delivery complaint, telling them that I had complained to NHS England, (enclosing a reference of course) they did forward my results, saying that all I had to have done was to sign a form giving them permission to access my records!!! That was absolutely rubbish of course, it was reception staff who refused to give me the results.

I was not given the chance to sign any form. When I asked I was told that the receptionist had to have the GP's permission to do that. I asked every time I visited or rang the surgery. I got nowhere.

During the last phone call I made to them I asked to speak to the Practice Manager. I found out who was at the root of the problem then.

She said that even if I went and signed that form on that same day, I would not be able to have my print out for at least 30 days.

So I told her that I would be making a complaint and put it out of my mind or I would have been driven mad!

But that is what some of these people want. They seem to love the power that they have and seem to be determined to keep that power no matter what. What sad lives they must have.

Just complain, complain, complain if you are not happy. Don't let them win.

[BrynGlas in reply to BrynGlas]

OMG sorry I ranted a lot!

[humanbean in reply to BrynGlas]

Your surgery can't refuse to obey the Data Protection Act 2018. It applies to the whole of the UK.

en.wikipedia.org/wiki/Data_...

ico.org.uk/

To avoid arguments with medical staff I write letters and take them into the surgery by hand, drop them off, and then walk out.

A letter will look something like this:

ico.org.uk/your-data-matter...

I would suggest adding to your letter that you would prefer your results to be provided on paper and that you will come to collect them on [specify date]. Take proof of identity and proof of address e.g. passport, driving license, gas/electric/phone bill.

[BrynGlas in reply to humanbean]

Hi humanbean, yes I told them that on a daily basis, but they did what they did anyway.

Thanks for the advice, but I wrote my letter of complaint and sent it as I said in my last message.

[humanbean in reply to BrynGlas]

I'm not suggesting that you write a letter of complaint. I'm suggesting that you write a "Subject Access Request". They are breaking the law if they ignore it, and you can report them to the ICO, the Information Commissioner's Office.

You really do get further if you don't talk to them, and put everything in writing in my experience.

[BrynGlas in reply to humanbean]

I agree with that, yes.

[BrynGlas in reply to humanbean]

Yes, I asked for a print out humanbean. I object to receptionists doing a GP's job

[BrynGlas in reply to humanbean]

I could have done with this info in February when I was pulling my hair out!!! LoL And I was at the end of my tether.

I don't think that I could do that now, because they finally did send my results by post and my complaint is within NHS England's domain now and I can do nothing until the Covid situation levels somewhat and they are able to find time to get back to it.

But I will save those links just in case I need the information again, God forbid. I may even print it out.

I don't want to go through all of that again, it was very upsetting.

[Jazzw]

Look into your B12 status as well as possible thyroid problems. Did you have any gas and air during labour? Because that can really deplete your B12 levels and it’s not always easy to get them to come back up again. B12 deficiency has a lot of symptoms in common with thyroid problems.

Hope you manage to get hold of your results! x

[SlowDragon Administrator in reply to Jazzw]

Very Interesting point about gas and air during labour...

[Karominka in reply to Jazzw]

Oh I never knew that. I had my B12 checked about a month before I started getting the symptoms and it was on the lower side but still in the "normal" range. I did get gas and air though, maybe worth checking again...thanks!

[SlowDragon Administrator in reply to Karominka]

So you need vitamin D, folate, ferritin and B12 tested

[Karominka in reply to SlowDragon]

I finally managed to get written results from the gp and the gp actually requested these tests to be done as well (I didn't know she did) All of these came back fine, except the vit D and vit B12 were on the lower side of the normal range.

[Alanna01]

Besides possible hashimotos another thing to consider is hormones. You have had a baby and may be experiencing a sort of 'postpartum menopause', which isn't the actual menopause but can result from the sudden steep drop off of progesterone hormone and induce the same issues.

When you are pregnant you get a boost in progesterone and oestrogen, and the increased progesterone is great and boosts your mood (and has a stimulating effect on your thyroid) hair growth accelerates etc.

Then the minute the placenta is out you start to experience a fall in hormone levels. The balance can go very out of whack and instead of returning to normal equibrilum and you can in effect experience a pseudo but dramatic peri-menopause with falling hair, temperature spikes, inability to sleep, weight gain, bad memory, mood fluctuations etc.

The progesterone affects the thyroid so if you had an undected problem before the sudden drop in hormone levels will have destabilised it further. I had undiagnosed hashis before I had my children and after my second the problems really kicked in. Felt great whenever pregnant though! Absolutely awful after birth right until this day. So it may have 'uncovered' the problem.

Plus you often get iron deficient after birth which doesn't help and makes you lethargic. All postpartum women should be offered replacement iron. They often aren't. I read people are increasingly getting their placentas freeze dried and eating it after birth to replenish their nutrient levels for that reason.

Maybe taking Evening Primrose or Starflower oil would help to balance out the hormones. Definitely get your test results, B12 Vit D and ferritin levels tested and a full antibody profile done. Also get as much quality sleep as you can. I wish I had been as knowledgable and done the same after I had given birth.

Good luck!

[Merlio18 in reply to Alanna01]

I agree to I have the same symptoms and I definitely think it's due to hormonal imbalance I have hashis and pcos syndrome and to much estrogen not enough progesterone so I always felt good on the combined pill but then they took me off it as I got migraines and never felt well since I to will likely feel amazing when pregnant but without pregstrone cream or protrap injections or herbal supplements to balance your hormones like macca or dim and the evening primrose magnesium b6 etc which might help maybe try after pregnancy supplement to try balance your hormones after pregnancy.

I would also look into private testing, and get your blood test printed off at the doctors they always try not to give it you at the doctors but if you know your rights they can't not print it out or email it you as I have made them do that in the past and if you can get access online they might not agree to you having full access but I pressured mine to do so and they said they have to hold a practice meeting which could take months so it might take a while and you need to keep pressuring them, as if your TSH is high and T4 on the low end in the range it's likely it could be the onset of Hashimoto's / hypo Thyroid symptoms but if you take a natural supplement it may balance out if you have only just started to get symptoms in this last year of being pregnant naturally with supplements and a hormonal balance diet plan.

[Marz]

Are you able to have Private Testing - with kits sent out to your home ? That way you can reduce the stress of battling with your GP. SlowDragon gave you the link above. Thousands here on the Forum use this method in order to have the correct testing - find answers - and start to be in control. It's a great feeling too 🤔

[Karominka in reply to Marz]

Thanks Marz for your suggestion. Yes I've heard about the home kits and will most definitely be using them in the future. For now I found a private clinic that can take my blood the conventional way so I'll just do that for now and use the home kits in the future as I think they're cheaper. Thanks!!

[Newmummy82]

I developed Hashimotos after having my son and catching a nasty virus. The post partum period does seem like a risky time for your thyroid. If your GP won’t test antibodies get a private test, hopefully your GP won’t argue with a positive antibody result and give you a prescription, although if your TSH is In Range they could be stubborn about it. Hope you get better soon, I remember how hard it was when I was sick with a little baby.

[Karominka in reply to Newmummy82]

Yes that's what I'm worried about, that the gp will just dismiss any positive antibody result. I mean, that is if that's the case of course. Thanks for your kind words though, I hope I will get some clarification once I get the blood test!