Can anyone please help me. I had a TT in March, I have a small amount of thyroid left. Since April I have had terrible stomach pains, indigestion, severe bloating and gas. I’ve had a ct colonography and Gastro said all good. I’ve tried gluten free, lactose free and FODMAP diet but nothing helps. I’m on 25mcg of Thyroxine and 5mcg of t3 (paid to see Endo I was so desperate). My results are
Tsh 2.61
Free T3 3.8
Free T4 14.7
I don’t have ranges
Full blood count, cortisol etc all good. I’m getting desperate, so miserable, even Gastro said he hasn’t a clue 😔
Is this typical of hypothyroidism and how I will always be?
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Redforme
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Hypothyroidism causes the body to "dry up". That includes stomach acid levels, which reduce.
Low stomach acid actually causes indigestion and stomach pain. Doctors usually suggest treating this with antacids and PPIs (Proton-pump inhibitors) both of which actually reduce the acidity of the stomach further and make the problem worse.
I wanted to understand why low stomach acid caused pain when doctors were telling patients that the pain was caused by too much acid, and I found a series of articles that explained it, and I found them very helpful, even though they aren't aimed at people with thyroid disease, they are aimed at people with SIBO.
Thank you for getting back to me, I’ve been taking digestive enzymes with food but I’m just in pain all day. I’ve read so much already about hypothyroidism, which has really depressed me. I really thought as soon as the Levo ‘kicked’ in my digestion would improve. Several friends are taking Levo but not one has stomach problems. I’m really beginning to wish I’d lived with the huge goitre chocking me because stomach problem seems to be 100% worse
I had a TT in March, I have a small amount of thyroid left.
This is probably a controversial opinion, but I think that, if doctors are going to take out most of the thyroid and just leave a small amount behind, the patient will do better in the long run if the entire thyroid was removed. Why did you have your thyroid (mostly) removed?
You might come up against doctors in future who think your tiny piece of thyroid is all you need and you will have to fight over and over again to be treated with sufficient thyroid hormone to keep you well. You should find this of interest, and possibly useful.
Your current level of TSH is too high for a healthy person with a healthy thyroid, too high for someone with hypothyroidism, and too high for someone who has had a thyroidectomy.
The average healthy person will have a TSH which is roughly 1 - 1.5, but people with hypothyroidism, or no thyroid find they need a TSH which is lower than that of healthy people, and often is actually under the range. But doctors think low levels of TSH will lead to the patient dropping dead or their heart to explode. Not true.
Unfortunately, doctors tell people with low TSH that they are hyperthyroid, even when that is impossible because they are hypothyroid or have no thyroid. Doctors aren't precise with their terminology.
The most important level from a complete thyroid function test is the Free T3. T3 is the active thyroid hormone needed by every cell in the human body.
You haven't given the reference ranges for your results but based on the ranges I usually see your FT3/Free T3 is too low. A common reference range for Free T3 is 3.1 - 6.8 but it does vary. If that is the range, many of us feel at our best with FT3 much closer to the top of the range.
Your FT3 is only 18.92% through the range.
50% of the way through that range (i.e. mid-range) is 4.95. Many of us feel best with a result of, say, 5.5+. Some prefer 6+. There are a very few people who feel best with a level over the range.
Whatever thyroid hormones you are taking - Levothyroxine, T3, or NDT - you aren't taking enough. What are you taking and at what dose?
Hi humanbean, I paid to see an Endo and he put me on 25mcg of Mercury Pharm Levo and 5mcg of t3, which cost me a fortune with private prescription. He didn’t give me ranges at all, hasn’t tested for any vitamins and just said come back in 3 months (obviously have to pay again). I feel absolutely rubbish. Apparently the tissue left was too close to my voice box to remove safely. I’m normally a get up and go person, I work out, I go to Pilates, I’m 64 but have already put on 5k. Never been so heavy in my life. Think I’m getting depressed too, I’m eating a very bland FODMAP low calorie diet but just in pain everyday
Hi Redforme, so sorry to read your post and to say I totally understand the paying out just to have help and increases it’s truly wrong! I don’t have the tummy pain, but I have headaches everyday and it’s wearing me down! Just wanted to add my v best wishes and get what you need!!
Yes I’m beginning to think you are right, as humanbean has brilliantly explained. Looks like another £250 visit to Endo. I just wish my GP would help but she hasn’t a clue on dosage to prescribe, thank you for your reply
Try to get an increase without paying out money.I would also try a magnesium supplement as hypothyroidism lowers intracellular magnesium levels (no magnesium blood test is of any use). Take magnesium away from thyroid medication.
No I don’t take any other meds. I’m taking vitamin d and k2, selenium and digestive enzymes before food. It’s difficult to get an increase without seeing Endo first, it’s so complicated obtaining t3 too
I’m taking vitamin d and k2, selenium and digestive enzymes before food. It’s difficult to get an increase without seeing Endo first, it’s so complicated obtaining t3 too
At moment you just need dose increase in levothyroxine
Up to 50mcg daily
Retest in 6-8 weeks
Likely then ready for next increase to 75mcg etc etc
The trouble with adding T3 too early is TSH drops and this makes getting increase in Levo much more difficult
Adding any T3 frequently results in very low or suppressed TSH …..which is only ok if you are on a high enough dose levothyroxine and T3
Guidelines of dose Levo by weight when ONLY on levothyroxine
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 near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Some people need a bit less than guidelines, some a bit more
TSH should be under 2 as an absolute maximum when on JUST levothyroxine
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).
Just to add a fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg with T3 said to be around 4 x as powerful as T4.
Some people can get by T4 only.
Others find T4 seems to not work as well as it once did that by adding in a little T3 - likely at a similar dose o that their thyroid once supported them with - their thyroid hormonal T3/T4 balance restored and they feel improved.
Others can't tolerate T4 and need to take T3 only - Liothyronine - as you can live with T4 but you can't live without T3.
Whilst others find their health improved better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
No thyroid hormone replacement works well until your core strength vitamins and minerals are up and maintained at optimal -
so best get ferritin, folate, B12 and vitamin D blood tests run and we can advise as just being in a range somewhere is not optimal and some ranges too wide to even be sensible.
On T4 mo otherapy we generally feel best with a T4 up in the top quadrant at around 80% with the T3 tracking slightly behind at around 60/70 % through its range.
On a T3/T4 combo you are better able to dose each hormone independently and suggest aiming for around 60//70% through both.
On NDT you track on the T3 and T4 may be higher or lower than when on T4 monotherapy and you dose to the relief of symptoms bearing in mind the T3 range given for synthetics.
It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH reading -
taking any form of T3 will lower your TSH reading - and when optimally medicated your TSH will likely be low/suppressed and its ok - as for all intent and purpose - you have not a working thyroid and if your TT was for Graves Disease this also means your TSH will be a very unreliable marker of anything and must not be used to dose or monitor you on.
To be fair, I think they actually believe that. And the problem is, they don't listen to, or believe, their patients when they tell them otherwise. Until doctors start listening to and taking their patients seriously, the problem will persist. But they just think we're all idiots, incapable of knowing our own bodies.
Yes greygoose I understand that but I would have been happy to be referred to someone that actually had some idea of a dose of thyroxine to start but she admitted she didn’t have any idea . Now I can’t get an appointment for 3 months with my GP because she wants to re do bloody but only Tsh
Sorry, wasn't casting aspersions on your perspicacity. That comment was made to pennyannie because she suggested doctors weren't being honest about the effects of the little white pill.
But are you really saying that the endo you paid to see had no idea how to dose levo? That's incredible! If we're going to pay out good money for doctors we have to be so careful to get the right one.
Yes - I 'm sure they do believe it and it also dovetails into the myth of the TSH being the most important blood test - it's all you need - that little tablet and a TSH anywhere in the range !!
Hi, bloods from hospital were Tsh 1.26 range 0.27 - 4.2 and free t4 17.5 range 10.8 - 25.5, I had no digestive problems for 6 weeks, went downhill from there 😔 I don’t have Grave’s I had a huge goitre choking me, they could t tell by biopsy if it was cancerous so I was advised to have it removed
So at discharge your TSH was 1.26 with a T4 at 17.50 and at around 45% and no T3 :
Your TSH has now risen to 2.61 which is signalling you need more thyroid hormones - and your T4 is now 14.70 with a T3 that looks too low to keep your body metabolising.
A ' normal TSH ' for someone not on any thyroid hormone replacement would be around 1.2/1.5 :
When optimally medicated you'll probably find your TSH is towards the bottom , if not under the range.
Could you speak with your doctor and if they have no idea - is there another doctor at the surgery who does - or could an urgent referral back to endocrinology be arranged - as your case file only a few months ago ?
I have contacted GP today but so far no response. Sadly when I did see the GP she admitted she didn’t have any idea on what dose to put me on hence I paid to see Endo. I’ve sent him an email today, I just feel so rubbish, I can’t wait the 3 months he has asked me to do before another blood test, thank you for your reply
With your doctor freely admitting she knows nothing - surely there must be another doctor at your surgery - who does know something - otherwise what are they doing being there !!
Alternatively she needs to get you an immediate, this week appointment back with the hospital endocrinology department - your doctor and the NHS have a duty of care and you need their support and medical help :
OK, well, I'm afraid that happens all the time. Very few doctors know much about thyroid because they just don't 'do' it in med school. Which is why so many of us learn about our disease and self-treat. It was obvious to me very early on that no doctor was ever going to make me well because they just had no understanding of how it all works. So, I started self-treating and have never felt the need for a doctor since - in fact, the last thing I want is some bumbling idiot that knows less about it than I do, coming along and fiddling with my dose that has taken me years to get right!
Thank you all so much for your replies and support, I’ve been under such a bad cloud and you have all given me hope. I can honestly say how life changing this has been for me, in hindsight I would not have had the operation 😔
but it sounds as if you really needed it. and the problem is not so much the op itself as the total lack of thyroid knowledge of the doctors treating you afterwards.
What’s the highest dose levothyroxine you have been on?
Retesting thyroid levels 6-8 weeks after each increase in dose or brand Levothyroxine
Which brand of levothyroxine are you currently taking
Typically dose levothyroxine is increased slowly upwards until on approximately 1.6mcg Levo per kilo of your weight per day
Unless extremely petite that’s going to be…….in 4-6 months time at least 100mcg Levo per day
ESSENTIAL to regularly retest vitamin D, folate, ferritin and B12 at least annually…..initially more frequently
As you are currently very hypothyroid vitamin levels likely very low
Exactly what vitamin supplements are you taking
For good conversion of Ft4 to Ft3 we must have GOOD Vitamin levels
Also ESSENTIAL to test BOTH TPO and TG antibodies at least once for Hashimoto’s
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
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
T3 ….day before test split T3 as 2 or 3 smaller doses spread through the day, with last dose approximately 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Hi slowdragon, I weighed 62k pre op forever, now weigh 66k, I’ve gone gluten free, lactose free and trying low FODMAP, I’m strictly on 1,000 calories a day but no weight loss in 3 months. I have only ever been given 25mcg of thyroxine, brand Mercury Pharm and 5mcg thybonne t3 once a day. No tests by either Endo, gastro or gp have included vitamins but I take vitamin d k2, selenium and digestive enzymes before food. My biggest problem is digestion, gut health, pain, misery, tired and muscle aches in legs. I exercise 4 times a week gym and Pilates and walk everywhere
clearly your endocrinologist not a thyroid specialist
Initially you should have started on 50mcg levo ONLY (no T3) …..and slowly increased dose up over following 6-12 months to full replacement dose of around 105mcg per day (66kg x 1.6mcg = 105mcg daily)
Ideally always same brand levothyroxine at each prescription
Which brand are you currently taking
For good conversion of Ft4 to Ft3 we must have GOOD vitamin levels
so next steps
Get vitamin levels tested and come back with new post once you get results
Improve all four to GOOD levels
Meanwhile
Get 25mcg dose increase in Levo to 50mcg
Retest thyroid levels again in another 2-3 months after increasing to 50mcg
Roughly where in U.K. are you
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations
Actually I’m am really disappointed with my Endo, I have paid for 2 appointments now and a blood test. He didn’t even send me full results just tsh and t3 but no ranges. I will email him tomorrow to say I am feeling so unwell and need to increase Levothyroxine, without a prescription I will be unable to do this. I will have to send a Pathway to my GP, they don’t take calls to request blood test for vitamins, not sure they will do this. I’m in Richmond, Surrey, like everywhere I guess it’s very difficult to get a GP appointment. The brand I am taking is Mercury Pharma but pharmacist said no guarantee they can get it next time. Teva gave me really bad diarrhoea. Thank you so much for your advice
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc. PLUS how to write prescriptions in Appendix F.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
My GP put not Teva on prescription, I have to go to all the pharmacy’s near me trying to get anything but. It’s driving me nuts. The last pharmacy said they only had 2 packs and may not be able to get anymore
The trouble with reducing your calories and exercise is the fact that you are using up more of your T3 this causes leg pains tiredness too. I have never had gut problems.
I would go back to your usual 1800 calories a day. After I had my TT I was put on 100 Levo for the first time and put on 10 lbs in 6 months which is a lot for me never having been overweight before and aged 69 years. When I eventually found the right dosage the weight dropped off in 6/8 weeks.
Thank you, pains in my legs and fingers today has been awful. My stomach is not happy. Even after a gluten free roll with 1 slice of chicken has sent it into a painful bloating frenzy, so miserable
Why has endo put you on T3 before trying T4 only ? I note you said it was expensive. Maybe its because 20% of t3 is made in thyroid ? Still feels to early to be doing it. I added a bit of T3 after several blood tests confirming I do not convert T4 to T3 well. T4 only is a lot simpler.
People on this forum are often more complex cases ... do not be scared. Are you not autoimmune type,as it was thyroid was removed that is making you need hormone?. AI like me tend to be more complex ... much better for you... Did they test antibodies I guess is the question?
I cannot take gluten but did not show on gluten /celiac blood test.
I stopped gluten before finding I was AI underactive. I had gut issues /bloating /runs ... sorted about 6 months after levo T4. Much better without gluten even before T4.
How long have you been off gluten? It takes months to clear/repair.
your best case is T4 only with no T4 . Normal is about 1.6x weight in kg which is of the order of 75 to 100 mg for females your on about equivalent of about 40 mg.(25T4/5T3).
I would ask for 75 mgT4 only.
If your gut issues started 6 weeks after the operation then this is time it takes for T4 dose to have effect. Your body likely not making T4 at all now.
I am fairly new and the wise/ kind ones above have helped teach me to be well. My GPs were clueless.
Sounds like you need dose increase quickly.
I would go back to the operating team and kick up a fuss, more likely someone at hospital will have more idea on dose.
I found tracking symptoms and showing doctor I was proactive helped get my dose up quickly. My heart is ok and no other health issues.
Hi sleepman, you are exactly correct, 6 weeks post op my gut issue started. Endo put me on both thyroxine and t3 but I have no idea why, I am really new to all this so didn’t even question him. I contacted my surgeon via his secretary and he did ring me saying he is a surgeon and my after care should be handled by my GP. I went to GP after 6 weeks but she didn’t know what dose to start me on, she gave me 25 mcg. I paid to see Endo because I’ve been so unwell, he then kept me on 25 mcg with added t3. Its all so confusing but after brilliant advice on here I know I am under medicated so I will get back into Endo Monday, even though I have to pay, I will just to get some life back
I had TSH of 78 and T4 not high enough to measure when I started ... so you have much better levels.I am gobsmacked hospital did not get you on thyroid replacement immediately.
I would be finding surgeons managers and asking for a written explanation to protect future patients.
Have you tried increasing the number of digestive enzyme capsules you take with meals?
I started with a product that was so weak I needed several. This is one I use with the first bite of food. I have some water ahead of the meal but only drink enough to wash down pills with the meal.
I take Lamberts, it says only 3 a day. Trouble is the enzymes help improve acid with food then I am up all night with chronic burning and heartburn so end up drinking gaviscon which stops pain so I can sleep
Hello Redforme, I just wanted to offer you some hope with your stomach issues….. I had the same discomfort as you after a hemi-thyroidectomy, but once I was on the correct dose for me of Levo, plus 5mcg T3, all my stomach issues disappeared. I know there’s no guarantee it will work for everyone, but there’s a really good chance that it will. I feel for you, I know how awful you must be feeling.
My GP (In Suffolk) has last year sent an email query to a consultant in the hospital instead of referring me, to save the waiting time for a person to person consultation, for haematology not for thyroid, but I wonder if this is possible for your GP to do in your region, to ask an endocrinologist for an increase in your Levo dose?
Thank you for your reply, and it is great to hear your stomach issues have improved. My Endo has now increased my thyroxine to 50mcg and 5mcg T3. He said it can take weeks to notice any improvement so I’m just keeping my fingers crossed. Meanwhile, I am continuing with a strict lactose, gluten free diet and only eating low Fodmaps, incredibly boring but if it helps I will try anything
Yes, I know that feeling that you will try anything in the hopes it will help! But it’s great news that you’ve now achieved the increase in your Levo dose, and yes it can take six weeks to feel the difference, but you may begin to feel a bit better sooner than that. Then after 8 weeks have another blood test because you may still need another Levo increase for your stomach issues to go away completely, (I did).
One of the many things I’ve learnt from this amazing forum is that it’s not just about being within ‘the range’ when you get your blood results, it’s about your levels being optimal, and so tweaking your dose to acheive that. It seems that all our GP’s are concerned about is that you are somewhere with the range.
I’m so pleased I found this forum, it has been so helpful. Endo has asked for a blood test in 6 weeks, meanwhile gastro has said he will test for bacteria in the gut and celiac disease but it’s annoying because now I have to eat gluten before the test. I’m feeling more positive today and especially hearing you had stomach issues too before being on the correct dose, thank you
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Understanding hypothyroidism and hashimotos 
still have stomach issues
Untreated Hypothyroidism
How can I get my t3 and t4 levels up
