GP has left me more confused, please help! - Thyroid UK

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GP has left me more confused, please help!

TooManyTablets profile image
21 Replies

Hello, I’ve been struggling physically and mentally for over 3 years since my husband passed away. I’m possibly in the early stages of perimenopause. I’m struggling with extreme fatigue, poor memory/ terrible brain fog, general aches/pains in joints & muscles, low mood and weight gain.

I was diagnosed with hypothyroidism in July 2024 and I'm currently taking 75mcg Levothyroxine. I've tested positive to thyroid antibodies.

My thyroid test results are now within the recommended range but I still feel dreadful. My FT3 result was within range: 5.7pmol/L [3.1 -6.8] (27th September 2024)

I've had other various tests for vitamin deficiencies, kidney function test, iron levels e.t.c. all have come back normal except:

28th May 2024

Serum folate level: 20.0 ug/L [ 4.6-18.7] above high reference limit

Vitamin B12: 1241 ng/L [197.0 - 771.0] above high reference limit

But results says no further action needed as I take a vitamin b complex tablet but I still feel exhausted all the time and my brain fog is awful.

My GP now wants to try me on hrt, even though my hormone tests are considered normal and my periods are regular and my cycle is a little shorter. I’m really don't know what to do as I don't want to take progesterone pill/estradiol spray. I didn't tolerate the combined contraceptive pill well as I constantly had breast tenderness and I wasn't any better on the progesterone only pill either.

I also asked for a cortisol test but the doctor didn't want to do that, in spite of me telling him about the discomfort in my kidney area when I'm overly stressed. Should I try asking another doctor?

Any advice would be very much appreciated and thank you for taking the time to read my post as well. Xxx

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21 Replies
Buddy195 profile image
Buddy195Administrator

I’m so sorry to hear about your husband’s passing. No doubt this trauma has affected you both physically & mentally TooManyTablets. I hope that you have family and friends to offer you ongoing support.

In your previous post you mentioned being prescribed 100mcg for hypothyroidism. How long have you been on the reduced dose of 75mcg? Were TSH and FT4 tested on this reduced dose alongside FT3?

TooManyTablets profile image
TooManyTablets in reply toBuddy195

Thank you for your reply.

I've been taking 75mcg since 5th September as my TSH levels went down :

Test results from 20th August:

TSH: 0.13 mu/L [0.3-4.2]

FT4: 22.8 pmol/L [10.0-22.0]

27th September results:

TSH: 0.16 mu/L [0.3-4.2]

FT4: 18.6 pmol/L [10.0-22.0]

FT3: 5.7 pmol/L [ 3.1-6.8 ]

I still have symptoms but the GP doesn't believe they're from hypothyroidism so I'm trying to get any other tests that may help explain why I feel so awful all the time.

Regenallotment profile image
RegenallotmentAmbassador

Previous post here healthunlocked.com/thyroidu...

Hi there,

Sorry to hear how you are feeling, 75mcg only one up from a starter dose and perhaps a little early for your levels to have settled fully,

Could you reply with all of your results and ranges (thyroid and other vitamins/minerals) from the most recent testing. Sometimes 'normal' isn't optimal and it helps to have the actual numbers. Then folks can do their best to help.

Peri-menopause can cause hormone levels to fluctuate day to day, hour to hour even, so testing isn't all that helpful.

Did you stop the B Complex 3-5 days before your blood test?

Biotin can affect the result.

Did you test close to 8am fasting with Levo dose 24 hours before?

What brand of Levothyroxine are you taking?

TooManyTablets profile image
TooManyTablets in reply toRegenallotment

Thank you for replying.I will get the rest of my results posted soon.

When I get my blood tests done (in a fasted state) usally at 9am each time and I take my Levothyroxine after test so its definitely 24 hours after my last dose.

I stopped taking my biotin about 3 or 4 days before test.

I take Teva Levothyroxine.

TooManyTablets profile image
TooManyTablets

28th May test results:Vitamin D: 74 nm9l/L [51-250 nmol/L ]

TSH: 8.4mu/L [0.3-4.2]

FT4: 12.1 pmol/L [10.0-22.0]

9th July test results:

TSH: 10.9 mu/L [0.3-4.2]

FT4: 11.6 pmol/L [10.0-22.0]

Thyroid peroxidase abs: 224 ku/L [ 0.0 - 34.0]

20th August results:

TSH: 0.13 mu/L [0.3-4.2]

FT4: 22.8 pmol/L [10.0-22.0]

27th September results:

TSH: 0.16 mu/L [0.3-4.2]

FT4: 18.6 pmol/L [10.0-22.0]

FT3: 5.7 pmol/L [ 3.1-6.8 ]

TooManyTablets profile image
TooManyTablets

Sorry forgot to add I started the 100mcg Levothyroxine 18th July and then started the 75 mcg tablets 5th September.

Regenallotment profile image
RegenallotmentAmbassador in reply toTooManyTablets

How about ferritin/iron have these been tested?

TooManyTablets profile image
TooManyTablets in reply toRegenallotment

Yes, sorry I forgot to add: serum ferritin level (tested 28th May)

36ug/L [13.0 - 150.0]

SlowDragon profile image
SlowDragonAdministrator in reply toTooManyTablets

So your ferritin is terrible and will be causing issues

Request full iron panel test for anaemia

low ferritin can also lower TSH

cks.nice.org.uk/topics/anae...

Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.

It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

If taking any iron supplements stop 5-7 days before testing

Medichecks iron panel test

medichecks.com/products/iro...

Meanwhile

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Posts discussing Three Arrows as very effective supplement

Great replies from @FallingInReverse

re ferritin and Three arrows

healthunlocked.com/thyroidu......

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great reply by @fallinginreverse

healthunlocked.com/thyroidu...

Ferrodyn supplement

healthunlocked.com/thyroidu...

Iron patches

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Iron and thyroid link

healthunlocked.com/thyroidu...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Good iron but low ferritin

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron

healthline.com/nutrition/he...

Iron deficiency without anaemia

healthunlocked.com/thyroidu...

Ferritin over 100 to alleviate symptoms

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Great research article discussing similar…..ferritin over 100 often necessary

ncbi.nlm.nih.gov/pmc/articl...

Low Iron implicated in hypothyroidism

healthunlocked.com/thyroidu...

Really interesting talk on YouTube, link in reply by Humanbean discussing both iron deficiency and towards end how inflammation can also be an issue

healthunlocked.com/thyroidu...

Inflammation affecting ferritin

healthunlocked.com/thyroidu...

Updated reference ranges for top of ferritin range depending upon age

healthunlocked.com/thyroidu...

Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:

Females 18 ≤ age < 40. 30 to 180

Females 40 ≤ age < 50. 30 to 207

Females 50 ≤ age < 60. 30 to 264l

Females Age ≥ 60. 30 to 332

Males 18 ≤ age < 40 30 to 442

Males Age ≥ 40 30 to 518

The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.

SlowDragon profile image
SlowDragonAdministrator in reply toTooManyTablets

Vitamin D: 74 nm9l/L [51-250 nmol/L ]

How much vitamin D are you taking

Are you also taking any magnesium supplement

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

TooManyTablets profile image
TooManyTablets

I've noticed on my serum testosterone level (taken 27th September) that it's at the top of the range and results say to speak to the doctor but he said they were normal.1.6 nmol/L [0.29 - 1.67]

It's probably nothing as levels fluctuate.

SlowDragon profile image
SlowDragonAdministrator

Gluten

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

A trial of strictly gluten free diet is always worth doing

Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential

A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines

nice.org.uk/guidance/ng20/c...

Or buy a test online, about £20

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial

With loads of vegan dairy alternatives these days it’s not as difficult as in the past

Post discussing gluten

healthunlocked.com/thyroidu...

Recent research in China into food intolerances with Hashimoto’s

healthunlocked.com/thyroidu...

only change one thing at a time or you can’t work out what’s helping

Teva Levo

This brand upsets many people. Have you only ever had Teva?

Buddy195 profile image
Buddy195Administrator

I take Teva Levothyroxine.

As   SlowDragon has suggested it could be the Teva brand you are taking causing adverse issues. Many members (myself included) cannot tolerate Teva Levo. Ask your GP for another brand to trial, such as Mercury Pharma or Accord, which are more easily tolerated

Hectorsmum2 profile image
Hectorsmum2

Just thought that I would add that it does take quite a while to feel better and to get all of your vitamins, minerlas and levels of hormones righ Stick with it, focus on your iron for now and you vit d levels. Keep comming back here untill you feel better.

Sleepman profile image
Sleepman

Sorry your suffering.I found getting Thyroid levels/issues stable and a lot of other things will improve/ressolve. It is slow though ...

I am 2 years in and have been mostly well from 3 months from start thanks to the great people on here like SlowDragon Regenallotment

Teva is lactose free though I think.See helvellas blog which is a great source of info.

+1 for checking out gluten as you are autoimmune type (high tpo)

Gluten wipes me out for a week with tiredness. It does not always show on blood test.

As autoimmune type your thyroid can release thyroid hormone in batches as the glands are dying off. Just to add to the joy and make it more complicated ...

JoBarr31 profile image
JoBarr31

I am so sorry to hear that your husband passed away, that is a deeply traumatic event for you to come to terms with.

The advice on this forum is excellent and very supportive.

Have you also considered trying to explore the emotional root causes of your illness?

I too have Hashimotos and am in remission / cured my Ulcerative Colitis 7 yrs ago - both brought on by emotional crisis and a nervous system in an absolute state! I’m sure it was also exacerbated by lifestyle and food, gluten is a prime suspect as someone else mentioned.

I would be happy to talk to you, autoimmune is my thing (having had several!) and I’m particularly passionate about exploring the root of it. I’m training to be a Holistic lifestyle and nutrition coach / MindBody Practitioner so please reach out if you feel a friendly chat would be useful. Lots of love, Jo

RachelP03 profile image
RachelP03

Given you take a B multivitamin, any blood testing for B12 will be completely pointless as it will be floating around in your body and showing good on blood tests. It doesn’t mean it is actually doing anything for you sadly as the route of B12 is very very complex. Do you have any B results from before you started supplementing? I think a minimum of 4-6 months without any B12 which also includes in fortified foods eg cereals will give you a better picture. It may be that you need injections for B12 but can’t be sure at this point. Sometimes a high reading of B12 can also mean you’re not utilising it in the cells. B12info.com is a great source of help as are the B12 charities or books by Sally P. Sadly a lot of B12 symptoms are also the same as thyroid though as well as iron. Unfortunately, to solve how you feel will involve moving a few puzzle pieces at a time and it won’t be one quick fix. Good luck.

Yellup profile image
Yellup

If you’re not even perimenopause and lost your husband 3 years ago you’re very young to be widowed. I’m so sorry . I had just had mine when I was widowed 2 years ago suddenly so I’m a youngish widow but not as young as you . It really sucks . I’ve had terrible anxiety since although I think it’s finally calming down now but with anti depressants . I’m sure your flare ups are due to the emotional strain . I became hypothyroid when I lost both my parents in quick succession in my early 30’s . Emotional stress can sometimes bring it on too . The people on here are very helpful and I often listen to them more than GP’s who don’t know very much so you’re in good hands on this forum . Take care and hang in there ! xxx

Natlouann profile image
Natlouann

Hi TooManyTablets

I’m sorry you are having such a tough time.

I don’t have anything incredibly useful to add re test results because I am in a similar place (diagnosed earlier in the year with Hashimotos and still trying to get medication right).

What I can tell you is that I have found my second trial of HRT patches was a godsend. the first time around I reacted really badly and had severe IBD symptoms but 3 years later I tried the Mirena coil and Evorel patches and felt a huge difference in the perimenopause symptoms.

It’s hard with multiple things going on because many of the symptoms overlap.

One thing I would say is that your tests are a lot closer together than mine - don’t know if that is a good thing or a bad thing but my gp makes me wait at least 2 months between tests so my adjustments in dose are further apart.

As my diagnosis was Hashimotos and antibodies were confirmed many years ago I have decided to try the autoimmune protocol diet. It’s not for weight loss, it is an elimination diet aimed at taking the stress off your immune system, reducing inflammation and figuring out if there are any key foods that aggravate your symptoms.

I don’t expect it to cure the Hashimotos or anything daft like that but think my body was in a very inflamed state. It’s early days, only just finished week one, but I have to admit that with no other changes I do feel a tiny bit better. As a bonus, for the first time in many years I have actually been able to lose a bit of weight.

I thought I was having a cortisol test - did a 24 hour urine sample but the test result that came back was for creatinine (all I know is that its an indicator of kidney function) which came back at the very top of the normal range (result 12.2 - range 6 - 13). I don’t think there is any harm seeing another doctor in your practice and asking for it again.

Alos, following comments on this forum I have asked for a branded levothyroxine rather than Teva (hopefully arriving today). I will post back on this forum if I think that change makes a difference (assuming I actually get Vencamil instead of Teva).

Sorry my reply isn’t massively helpful, just wanted to reinforce here that you are not alone.

Hope you are able to find some solutions and improvements soon.

Dawney63 profile image
Dawney63

I cant really give you any advise.I lost my partner may 2022, I had felt unwell for a while before he died.

Last year I was put on levothyroxine, I'm now taking 100mg, I like you feel terrible, I have the same symptoms as you, the tiredness and brain fog is overwhelming .

My GP says thyroid levels in range.

I'm now saving up to see a private consultant.

Just saying your not alone.

Chocolate1970 profile image
Chocolate1970

Hi , I'm so sorry to hear that you're husband passed 3yrs ago and that you have been suffering physically. If you're still not feeling well despite being on levothyroxine can you check that you're being given the same brand all the time as changes brands can affect how you feel .Having gone through the menopause myself , I'm now postmenopausal. When I was going through it I was having lots of physical issues and everything was put down to menopause and I was given hrt patches to try , despite telling my gp that it wouldn't agree with me I gave it a try . Well 2 days I had the patches on for and my mental health got really bad hence to say I had to remove the patches .

If you feel the contraceptive pill didn't agree with you please be cautious of hrt . The gps put everything down to the menopause. Please stick to your gut feelings and yes I would advise you to go and see another gp .

Good luck

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