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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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
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 ?
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
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