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:
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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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?
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.
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?
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.
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
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
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.
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.
My doctor gave no advice on taking any vitamins, supplements or diet, even when I mentioned taking these. No surprise here but they really should do this!
I was taking Vitabiotics ultra Vitamin D3 1000 or 2000 IU but fairly recently I've changed to the Better You Vitamin d3 and k2 spray.
I also take Nutrition Geeks magnesium glycinate 3 in 1 (contains 1000mg magnesium glycinate, 400mg malate & 400mg citrate) 1800mg
I usually take all vitamins and minerals about 4 hours after Levothyroxine but I appreciate the reminder.
I'm so glad all this info is here for me to refer back to, thank you again! Xxx
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]
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
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
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
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
Thank you for this really great advice and useful information!I need to try going gluten free and see how my body responds to this but it might be worth getting tested before I do it. I'll see if my GP will test it otherwise I'll get my own test.
I was put on 100mcg Accord Levothyroxine when I was first diagnosed and then changed to Teva 75mcg. I need to try another brand or go back on Accord at this lower dose to see if that improves my symptoms.
It's difficult to decide what I should change first, as like you said I won't know what's working!
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
Thank you for this suggestion. I will see if I can get on better with a different brand of Levothyroxine as so many of you don't seem to tolerate Teva well.
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.
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 ...
Thank you for your response.I'm considering going gluten free so it's definitely something I should be getting on with. I would love to be able to manage my symptoms through better food choices rather than more pills that come with all sorts of side effects which only add to all our problems.
Thank you for reminding me to try and have more patience as it takes time to see what works and what doesn't. It's so very frustrating but I'm glad I have lots of good advice here to help keep me sane-ish!
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
I'm thinking of going gluten free as quite a few people seem to have good results after trying this. It's worth a shot anyway and I doubt it can make me feel much worse!
I'm certain the trauma, especially due to the nature of my husbands death, has caused my thyroid issues. I think, genetically speaking, I would be quite likely to have thyroid issues as I got older, due to my grandmother also having hypothyroidism but maybe because of the sudden trauma it caused it to happen sooner. 🤔
The trauma of losing his Dad has started my son's psoriasis off too (my sons Dad also had psoriasis but his started later in life) and many of our close family also have autoimmune issues.
I've been trying to look at root causes of autoimmune diseases and the gut biome/gut health has been an interesting source of information concerning this.
My diet has been very poor in the past and I wonder how much of this has contributed to my hypothyroidism. Does poor diet choices make you more prone to autoimmune problems? I think it's highly likely and increases the chances if you also have family history of autoimmune problems.
Yes auto immune is highly likely to already run in the family - my mum had Graves (which is an overactive thyroid) but she reversed it when her personal / emotional life became stable - a horrible divorce triggered her Graves.
And also yes I think poor diet choices most certainly inflame and worsen the issue. Some would maybe disagree but I don’t think poor diet / lifestyle choices cause auto-immune but it’s something to get on top of asap. Even if it’s just to increase your energy and vitality so you’re in a physically better position to tackle the other issues. And poor diet/lifestyle may (highly likely) have a detrimental effect on sleep which is sooooo important as we all know!
But as a lifestyle and nutrition coach (specialising in autoimmune/Hashi) my approach is always holistic - I look at everything (lifestyle, nutrition and emotional health - stress etc) and one by one we deal with it ☺️
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.
Thank you for your support.My friend mentioned her problems with vitamin B12 and she seems unable to convert things, which made me wonder if I was having similar issues. 🤔 It does seem very complicated but I will take a look at the books by Sally P and the website, thank you for recommending these.
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
Thank you for your words of encouragement and so sorry you are a widow too, it really does suck! You sound like you've been through an awful lot, it must be very difficult but I'm glad your anxiety has reduced.Everyone here has been so helpful and kind. I'm so very grateful that you and others have shared these things with me.
Our GP's really don't do themselves any favours and it's so disheartening that we often come away from our appointments feeling even more hopeless than before as they just don't seem to listen or care sometimes!
Bless you and yes I actually told my GP yesterday that putting it bluntly, they’re now taught enough about the thyroid at medical school apart from probably a week long crash course! He’s a lovely GP so I’m lucky that he listens . But I go to an endocrinologist for my thyroid appointments and I got him through this website . I also use this website for my thyroid help as if I relied on my GP’s over the years I can’t imagine where I’d be . But most intelligent people end up doing their own research and don’t rely on their GP’s after a while .
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.
Thank you for your response.I really appreciate all the replies I've received here and the suggestions are giving me things to focus on instead of dwelling in despair.
I will ask to change the brand of Levothyroxine as I've noticed this seems to be quite a common problem with this.
That's encouraging to hear about the autoimmune protocol diet helping you to lose some weight. I really must try it as I was considering trying going gluten free but maybe I should start with this?
I'm so glad your second trial of hrt patches helped you. I'm still very wary of hrt but I'm open to trying it if nothing else helps.
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 .
Thank you for replying and sorry you also have lost your partner. 😔 I hope you have more luck with a private consultant and start getting the help you need.
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 .
Thank you for your advice.I will see another GP and see what they advise as I'm really worried about taking hrt especially with my mental health being so poor at the moment.
I notice that a lot of women are told it's their hormones (menopause or PMS) or anxiety, instead of the doctors looking for why they are in pain.
Others here will surely have good advice for you about your thyroid.
You said you take B complex. It's worth checking the amounts on the label. Some b complexes are 100mg of each b vitamin rather than 100% RDA. This can make you feel really ill. And some people can't even take the 100% RDA ones without a bad reaction (me). So you might want to consider coming off the b complex for a bit and see if you feel better.
Lots of good advice already. Regarding cortisol, few NHS GPs recognise this as a problem unless you have Addisons disease. You can test for yourself (see thyroid UK site for the latest links to who will test, and maybe discount codes too). Are you happy to read books to learn more and work out your treatment yourself? If so, Izabella Wentz has a book "the Adrenal Transformation Protocol" which I'm finding helpful, alongside her Hashimoto's book which is well-regarded on the forum. This is based on nutrition, adrenal "adaptogens" and supplements, and also discusses symptoms and mechanisms. There are medical options but I've never gone that route so can't advise, though others on here have success going the medical route but this has to be done very carefully. Hope that helps
Thank you for your help.I will definitely get the book for further reading, thank you for this suggestion. I've still got to read the Hashimoto's one as I'm struggling to manage my time at the moment.
I will also get a cortisol level test soon and see if this can help me get some idea of what is happening. 😊
Welcome please take it easy though, one thing at a time. This is definitely a marathon not a sprint, we have limited mental as well as physical energy although it will get better; don't give yourself a hard time if it takes a while to read and absorb a book. The Hashimoto's book has some info about adrenals anyway, so I'd read through that first and see if you need the ATP one for more help.
It's very possible your adrenals are suffering, but also some people do apparently find that once the thyroid is sorted the adrenals sort themselves too. Sounds like the Teva levo could be upsetting you, so maybe the very first thing to do is switch from that, there are lots of people who have a named brand on their prescription as they don't tolerate some other brands.
In terms of bang for your reading effort buck, I'd first have a read through all the links in the replies to this thread e. g. from SlowDragon, and then go for the Hashi's book the same way you'd eat an elephant - in bite-sized chunks!
Others have already commented with very sound advice.
I just wanted to add something about Teva levothyroxine. It has Mannitol as a filler, which seems to be behind the horrendous side effects some of us have on this medication. I had brain fog and cognitive issues, dizzy spells and balance issues, headaches and painful eyes, aches and pains and generally felt dreadful.
It took several months after I stopped taking it before I felt better and my eyesight has never recovered. Even though I reported these side effects with the yellow card scheme, the pharmacy and the GP and my endo wrote to the GP telling them I must not be given it, I had to check every prescription before leaving the chemist as they ignored the advice and kept giving it to me!
Do you know if the brand was different when you were on 100 mcg? If it was different then I would start there with changing from Teva. The other things also need sorting too, but if it is Teva causing you to feel so bad nothing will change until you recover from that.
I got a bit overwhelmed by the number of replies so haven't read it all. I don't know if this was mentioned or not.
If you decide to try hrt, I suggest asking to start at the lowest dose. It can always be changed at a three month review.
I am someone who needed a different than usual dose and it was a hard road getting plonked on the common doses then Doctors being baffled at all the problems. No idea why they don't start low and work it upwards as needed. They start with what most need instead.
So, for that reason, if you try I recommend starting low and going up as neeeded. More likely to avoid stronger side effefts that way. It is normal for an adjustment period though.
Thank you for this suggestion I really appreciate it, especially after starting Levothyroxine on a fairly high dose. It's good to be reminded to start as gently as possible.
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