I’ve had Hashimotos for years now and generally seem ok on a low dose of levo 50mcg.
more recently I have experienced bad pelvic pressure and bloating.
Before that I had a private health check with a gynaecologist because of severe dryness burning and discomfort all was ok with the uterus and vagina. She prescribed Vagifem which I took as prescribed for a couple of months but then discontinued because I developed severe pelvic discomfort, water retention and difficulty urinating and had bloating - discomfort extending into the anus. The bloating and water retention has gone since I stopped the Vagifem but they did help with the vaginal burning. I now have ongoing pelvic discomfort and heaviness extending into the anus! I also have ongoing pins and needles and numbness in my legs and feet. Bit of wreck really! I’m slim and active when I feel ok and eat healthily but not meat. I am wondering what to do next. I’m reading lots and looking at Isabella Weitz book on Hashimoto wondering if I should cut out dairy produce which I eat a lot of. Help!
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Cecilbenhard
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Do you have a copy of your latest blood results that you can share with us? 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.
Thanks Jaydee, my blood tests are only done annually as the gp won't do them more frequently. they are: serum ferritin 47, serum B12 is 533, serum folate 17.3, TSH 3.35 (doctor say this is ok) all done in March this year. I take multi vita and magnesium and fish oils.
Your GP might say that your results are fine but they absolutely are not. If you are under replaced then symptoms and low vitamin levels will begin to stack up over time.
TSH should be at or just below 1 where most people feel well.
Insist GP increases dose.
Now more than ever we need to take responsibility for our own health rather than relying on a failing NHS.
Multivitamins are not recommended for a number of reasons including being too lower dose to raise your level to optimal, poor quality, inactive ingredients, contining iodien which isnt recommended etc
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Serum B12 test isnt as accurate as an active B12 test. You havent given the range for folate but likely you would benefit from a good methyl B complex to balnace B vitamins.
B complex suggestions: Slightly cheaper options with inactive B6:
Your TSH is too high. You're not taking enough levo so need an increase.
Low levels of thyroid hormones can be responsible for many and varied symptoms and you wont know if it can help until you get your dose raised. Most likely it will help.
Be strong with your GP and dont take no for an answer.
Could this too low level of TSH account for the pelvic discomfort I am getting?
your TSH is too high , not too low . (a dose increase in levo will raise your fT4 level , the higher fT4 level will then lower your TSH)
GP's are advised to keep TSH below 2/2.5ish in all patients on levo , here's a useful list of references for this ( just in case your GP thinks TSH over 3 is ok because 'it's in range' ~ unfortunately lots of them do) : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-
simple explanation of why TSH 'anywhere in range' is not the same as optimal for the individual : healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-(*-over-2.5-3-ish)
Generally not high enough doses to improve any genuine deficiency
Most contain iodine not recommended when on levothyroxine
Most contain biotin, you need to stop any supplements that contain biotin 5-7 days before all blood tests as biotin can falsely affect test results
ALWAYS test thyroid levels early morning and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Request/politely insist on 25mcg dose increase in levothyroxine
Retest 6-8 weeks after dose increase
Guidelines of dose Levo by weight
approx how much do you weigh in kilo
Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).
Thank you Slow Dragon - I weigh approx 46 kilos. On 50 mcg highest I have had over the years and I’m 70 years old active and fit when I’m not exhausted! I’ve asked for an increase and the female doctor is unhelpful - thinking of going private despite the cost - so wrong!
Lactose free brands - currently Teva or Vencamil only
Teva makes 25mcg, 50mcg, 75mcg and 100mcg
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Vencamil (currently 100mcg only) is lactose free and mannitol free. 25mcg and 50mcg tablets have just became available this month
How to get Vencamil stocked at your local pharmacy
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
so you’re petite and possibly only going to need some where around 75mcg daily
You might need a bit less or a bit more
Request increase initially to 75mcg 4 days a week and 50mcg 3 days
Retest in 8-10 weeks
Test 24 hours after taking 50mcg dose
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
yep I couldn’t use vagifem as it gave me terrible pelvic pain. I’m ok with estriol cream but need it more than twice a week really. Lactose is the culprit for me 🌱
How do I know it’s lactose - Because when I had HRT (long story misdiagnosed before thyroid DX) I had terrible reflux continually and thought it was menopause. It stopped overnight when the GP DX Hashimoto’s and she said to stop the HRT. Milk cheese yogurt butter all give me diarrhoea and sickness, urgent bowel movements 10+ times a day. I had Accord levo once and within an hour I was burping gurgling with painful tum. I did an elimination diet following Izabella Wentz book and cleared up instantly. Tried vagifem and had painful bloated hardened tight feeling abdomen and pelvic pain. GP said it’s common side effect and suggested estriol cream. 🌱
So useful thank you. Sounds like there are some similarities with my problems. I need to follow up on s of these - intolerances, IBS maybe, prolapse maybe ! Things definitely not right.
I would say get a second gynae opinion. That doesn’t sound right. Estriol every day might help but you want to be sure you don’t have a prolapse & check if your ovaries and womb are ok.
Ok, I saw the gynae a few months back and she did an examination internal and external and used a vaginal probe to look- do you think I should see someone else?
judging from your symptoms and the subsequent prescription of vagifem it would appear that you have vaginal atrophy. Sounds an awful name but it’s basically the lowering of estrogen levels within the vaginal tissues that causes a multitude of symptoms such as dryness, burning, uti like feelings when no uti is present, prolapse, continence issues, pelvic pain and pressure. The list is huge and atrophy is extremely common as our hormone levels drop.
Firstly when starting any vaginal estrogen like vagifem or estriol cream (sometimes called Ovestin) its usual to to use it daily for at least two weeks (called a loading dose) and then reduce the dose to 2/3 times a week. Some still need it every day to be comfortable. This will build up the estrogen levels in the vaginal tissue and hopefully resolve symptoms. It’s alsk recommended to use an internal moisturiser like yes vm or hyalofemme alongside every night to help reintroduce moisture. This can make a huge difference in its own also even if you aren’t on the estrogen .
I tried vagifem but it didn’t suit me either so I tried Ovestin and didn’t like that or the mess that came with it. I ended up on estring which is a small inserted ring that contains estrogen only and no other excipients and so all the discomfort feeling s completely disappeared. I would then use Ovestin cream on the external tissue to help soreness and itching there. Also the estring is worn 24/7 and only needs changing every 90 days so it didn’t really require thinking about and thus was so much easier to manage.
I would ask to try a different method of internal estrogen if the vagifem didn’t suit and also get hold of an internal moisturiser to use nightly. If you can get some Ovestin or estriol cream use that externally (including anus) each night for two weeks and then every other night to maintain.
All of these steps made a huge difference to my pain and discomfort levels but I was only one I started body identical HRT that all the symptoms truly resolved.
Feel free to direct message me if you have any questions. I have a lot of experience with this subject and also know of a great specialist if you need one. There’s also a Facebook group called vaginal atrophy that offers great support and advice.
You’ve had some excellent replies regarding both thyroid levels and hormonal imbalance, however you have also mentioned problems in your legs; those symptoms alongside the vaginal/anal issues might suggest an issue with your spine, possibly a trapped nerve. Have you mentioned these specific symptoms to a GP as they might think it worthwhile for you to have them investigated? Good luck…miserable symptoms, I empathise.
Thank you so much. What wonderfully supportive group of people you are. This is really helpful and I’ve been trying to get a GP appointment for ages and they just keep saying I’m on the list! A trapped nerve is something I also thought of. I am wondering whether to go privately but not sure which specialist I would opt for 🙈
You could try a letter/email to your practice manager explaining that you have “saddle area” issues along with tingling to lower extremities and would therefore appreciate being seen by a GP at the earliest opportunity in order to request a referral to an orthopaedic consultant, if the GP thought it necessary. Once in front of a GP (or on phone with) you can explain more fully. My reasoning is that if they thought it possible that you have Cauda Equina symptoms, they would want to see you pdq.
Please get another opinion, see your GP asked to be referred to gynaecologist or get further tests. Have you had any other blood tests or been referred for scans done from GP regarding this circumstance, as this should be first thing that’s done.
Although you may of had a reaction to the medication cream given to you this needs further investigation to be sure nothing else is causation be that digestive or gynaecological.
If you have Hashimoto’s you have more predisposition to getting gynaecological problems…this is speaking from experience too, I have now ended up with 3 gynaecological conditions … and my symptoms are lower back upper thigh bloating constipation and pelvic related problems but no period related pain which has always thrown medics off gynaecological area … had lots of nutritional deficiencies not helped by having coeliac disease, but having long periods and abnormal bleeding which been dismissed for many decades.
I have a few autoimmune conditions …GPs have been too eager to blame my autoimmune problems so my gynaecological stuff was missed, until the late menopause that kind of gave them something else to consider so Ive waited many years to try to find what my problem was…I’m telling my situation as I don’t want others life to be being ruined or put on hold as mine has for nearly a decade … please consider everything and spell it out to your GP you have to plant that seed of thought in Drs heads as we don’t all show up as text book patients, with run of the mill symptoms and bloods don’t always show true picture of health there’s normal and what is optimal for you.
I’ve had numerous ultrasounds and a pelvic MRI now … but after finding few anomalies…I have not made my mind up if it’s worth have total hysterectomy (absolutely everything taken away) as my injections I had over past 6 months wasn’t conclusive enough for me and given my age and almost through menopause (hormones reducing) I worry of long term other consequences of this procedure - which won’t go into here.
I’m 58 and late menopause and menopausal symptoms can throw some medical professionals off track, just putting down to being perimenopausal but this should not stop further investigations eg other blood tests to rule out other things and ultrasound as first instance eg fibroids cysts adenomyosis etc although these maybe ok a pelvic MRI could tell you much more as it did with me … unsure of your age to suggest if anything is related to being perimenopausal or pre or post…to look at this area more… but would seek out another gynaecologist appointment if this was me ask for MRI - shows up far more things.
Thank you. The pins and needles has been about 2 years. I’ve seen a neurologist who ruled out peripheral neuropathy and suggested an investigation of the spine which I’ve asked for through my GP but can’t get a GP appointment to discuss it. I’m actually 70! So long past menopause. But Hashimotos and joint paint been ongoing for years. Pelvic pressure been happening for some months and the pelvic pain and anal discomfort more recently so I’ve stopped the Vagifem which has helped a bit but still getting g it a little. . Have seen one gynae privately who examined internally and externally and said uterus ok but I think I’ll see another gynae privately - all very expensive. Hard to know which specialty to see or whether I just try and get an all over MOT!!
I have gone privately too for all my health care gastroenterologist, 2 different orthopaedic, 2 endocrinologists and gynaecologist and 2 of my pelvic ultrasound scans and 24 physiotherapy sessions in early days trying to strengthen my muscles to help pain, along with few NHS ones.
Examination and ultrasound can’t tell you everything I was told, I was given mri which highlighted endometriosis on my bowel and pelvic cavity … a pelvic ultrasound picked up adenomyosis on every scan I have had (4) I had abnormal cyst (hormonal which come and go) didn’t pick up Polyps or endometriosis of course…but Drs disregarded findings as my age and nearly through menopause shouldn’t be a problem as hormones decline thing may get better 🤦🏻♀️ just gave me another ovarian cancer blood test to be sure, as bloating constipation, full feeling and pain were symptoms of that … gynaecologist said they shouldn’t just disregard these things, I have conditions that can cause these types of pain discomfort I suffer from.
I had a Hysteroscopy and 2 polyps removed last Autumn under general and coil fitted all privately to help with abnormal bleeding…I was still having regular periods and abnormal bleeding although uterus was normal on ultrasound scan, proving the MRI was required to get proper diagnosis.
I’ve seen privately 2 different orthopaedic consultants. I have had many full spinal MRIs and pelvis (but only looking at their area) nothing much found just degenerative discs and wear and tear, unless it’s a facet issue (so spinal injection is next option re orthopaedic side of things) but there’s no nerve impingement or abnormalities … with all that in mind my Gynaecologist said my pain shouldn’t be disregarded, when clearly late menopause was causing some discomfort and with proper gynaecological investigation it was found it could be the source of my issues, although if my nerves involved the pain may never really go… it’s like amputees can have phantom pain where their limbs were, its similar when nerves are triggered it remembers apparently.
I did get pins and needles and extreme heat tingling sensation down left outside leg but after a year of B12 injections and my levels kept high along with better ferritin levels these went along with restless legs… I did suffer a spinal injury thoracic disc hit my spinal cord in 2012 which is where I found out had all manner of conditions and issues I was totally unaware of had been very active and felt well previously so this was complete surprise to me, and amazed Gastroenterologist as poor levels wipe most people out… I looked and felt well thankfully.
My vitamin D was 9… B12 just double figures and very aneamic.. had to have ovarian cancer checks (had a few over past 12yrs) and bowel cancer checks (had a few over past 12yrs) my coeliac antibodies were off scale and high TSH so obviously thyroid problems along with pernicious aneamia… all found from turning over in bed causing everything below waist to stop working including my legs (paraplegic shock it was described to as) … it took a few weeks to walk properly and then GP sent me to physiotherapy once I could get about, GP said it’s just a trapped nerve … physiotherapy wouldn’t touch me and made urgent private appointment to see orthopaedic with neurology as speciality, and apparently I was lucky to walk again, it also lucky it was a soft protrusion and went back to normal over years but unfortunately 12-18months later I’ve had episodes of debilitating lower back pelvic pain putting me in bed hardly moving and now don’t drive, thought was thyroid or Levothyroxine causing as got various digestive issues on different brands then kept up same they disappeared … although in 2020 going on hrt was absolute godsend I was able to move and although not perfect agile I can just about look after myself, where I was having husband dress me etc… very stressful with him working all over the world at times.
I’m sure progesterone was key to be honest I know good for thyroid and that is first thing usually to decline… due to abnormal bleeding had to get investigated finally as over 50 so finally ticked box to be referred.
Regarding menopause it doesn’t matter what age you are to take hrt…if you are getting problems which decline in which the loss of hormones it could be the root of the problem, it can benefit some … but I can see many GPs disregarding due to age but many now your age are getting benefits from hrt… not sure if NHS has limit when start it though.
Hope they find something when you next investigate… yes it’s a costly affair if paying yourself… can you not book in advance for GP 3wk wait or was here, here gynaecology has 2yr waitlist a friend has prolapse (after hysterectomy) but going private now as can’t wait that long … I only go to GP for my annual review for longstanding conditions (get my blood tests taken at local hospital, surgery don’t even do them now) and B12 jabs.
We have specialist nurses and practice pharmacists dealing with many things that GP did and still no appointments… NHS will be forever overstretched if primary care fails as more demand on other areas.
100% because you are under medicated. The list of weirdness the undermedicated Hashimoto sufferer experiences is endless and is mainly what baffles doctors. They will never join the dots sadly.
I agree with Hashiskip18. Your bladder or pelvic organs may have fallen. I had a full hysterectomy and 5 years later had surgery (Cystocele for Fallen Bladder) It was very successful. My dr was an UroGynocology. I am in the USA. This is a good info site: my.clevelandclinic.org/heal.... I am on NP Thyroid. I also am on estradiol. It took a while to get both regulated.
Agree with a previous comment, could also be an issue with B12 regarding the bladder and leg nerve issues. B12info.com is excellent source of info. Of course its another issue that is wholly underdiagnosed and undertreated.
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