I have been seeing a private endocrinologist - I have employee health insurance - as I have been experiencing some fluctuations in my T4/3 and TSH over the past 3 years or so. I posted about this in June. I have Hashimotos and my TSH has veered between 0.07 and 16.9 but my T4/3 have generally stayed in range. I have not had a big hyper swing. The endo initially felt I might have conversion and absorption issues.
The Dr is on the list of ‘recommended’ practitioners from T-UK. I did a lot of research, I chose them as they are known to take an holistic approach . Since I have anemia (macrocytic, iron and pernicious) plus gastrointestinal problems, plus a history of cancer, I wanted to see someone who could help identify how much each of these are the cause of my fatigue, brain fog , peripheral neuropathy etc., In the past it’s felt like plugging a leak in a pipe and then another appears! I never seem to get everything in balance at once.
They ordered a battery of tests - stool, blood, urine, breath, they cost approx £1000, thankfully covered by my insurers. The Dr identified Small Intestinal Bacterial Overgrowth (SIBO) so recommends considering a low FODMAP diet. They also recommend a lot of supplements, digestive enzymes, something to reduce inflammation, some referred to as natural antibiotics and many more. I have received the list of them now - so far I’ve totted up £500 worth for a three month period. And that’s not all of them. Obviously my insurance would not pay for those, but I can scrape it together, just. I wonder really though if I should acknowledge that this is beyond my means and stop now, that answers/improvements are out of reach? One added issue is that they mentioned a possibility of scanning my pancreas, which would be beneficial to me as we have a family history of BRCA cancers that increase pancreatic cancer risk. But this would only be if the supplementation doesn’t improve my test results. I’m so confused and honestly annoyed with myself for getting myself into this mess!
I know it’s a bit vague but If anyone has general advice, I’d so appreciate it. I can give specific details of the supplements if anyone would be interested!
This raises more questions than it answers. And the first question I would ask is: did you have any nutritional testing - specifically vit D, vit B12, folate and ferritin, the basics?
Next, I would ask: did this endo advise you where to buy your supplements: i.e. is he involved in selling them?
And, then of course, if you want advice on whether or not you need any specific supplement, or if it's something quite useless, we'd need a list of these supplements.
I can't imagine anyone needs over £500's worth of supplements a month. When would you find time to swallow them all? And, of course, I have absolutely no faither in any doctors' advice when it comes to supplements because, in general, they haven't a clue. So, I really think that to be able to get any helpful comments, you need to give us more information.
Yes, sorry, I know it was a terribly broad post. Yes, bloods for basics. I have B12 injections every 8 weeks so the resukt us always high for that. I already use L Methyl Folate 1000mcg and 100mcg Vit D3. Haven’t found an iron supplement I can tolerate, highly tempted by an infusion! These were some of the bloods -
Investigations 07/09/2023 8.50am
TSH 0.03 mIU/L 0.27 - 4.20
Free T4 16.6 pmol/L 12.0 - 22.0
Free T3 5.1 pmol/L
Thyroglobulin antibody 17.2 IU/ml
Thyroid peroxidase antibodies 142 IU/ml
Vitamin D 94.39 nmol/
White Cell Count 4.1 10*9/L
Haemoglobin 130.0 g/L
Platelets 237 10*9/L
RBC 4.8 10*12/L
Haematocrit 39.8 %
MCV 83.4 fl
RDW 48.0 fl
Neutrophils 1.7 10*9/L
Iron 8.5 umol/L
TIBC 69 umol/L
Transferrin saturation 12 %
Ferritin 18 ug/L
Whole Blood Potassium 1940 mg/l
Whole Blood Magnesium 37.8 mg/
SUPPLEMENTS
I include the blurb bits but only for completeness! Ignore as you wish?!
i) GUTTAE PEPSIN 5 drops three times a day before meals increasing very slowly to 20 drops three times a day before meals. Stop if you experience a warm feeling & reduce dose to one below until sensation disappears.
(ii) GLUTEN DPP IV – take one immediately before a meal. This contains a comprehensive set of digestive enzymes. The intention is to aid digestion and target symptoms of gas, bloating, and altered bowel movements (constipation or diarrhoea).
(iii) PERM PLUS 2 capsules three times a day; 20mins before a meal for 2 months. Permplus contains ingredients to help reduce inflammation. It also has a specially formulated brand of glutamine that helps to reduce the adverse conversion to ammonia (which can be toxic).
(iv) COREBIOTIC SENSITIVE one tablet twice a day at least 30 min before meal.
(v) MICROBINATE: kills pathogens/bad bacteria. (Take for total of 2-4 months). Start this after the antibiotics at a different time to probiotics. First week: 1 tablet twice daily,away from food. After the first week: 2 tablets twice daily, away from food.
(vi) BUTYFLAM (Butyrate Coated) 2capsules three times a day, ideally 20minutes before meals . Butyrate might help to reduce inflammation.
i) CALCIUM-D-GKUCARATE. Take one three times a day with meals. Calcium D-Glucarate is a combination of glucaric acid bound to calcium. Glucaric acid is a naturally occurring chemical found in our bodies and in certain fruits and vegetables, albeit, in very small amounts. Calcium D-Glucarate supports the glucuronidation pathway of detoxification.
QUATTROFERRIN® 21 60's. Product code BG-051. One capsule daily taken with plenty of liquid. Best on an empty stomach or one to two hours after a meal and 2 hours apart from other supplements. Biogena QuattroFerrin®21 - with four different iron compounds in the unique QuattroFerrin® blend, practically complemented by vitaminC from camu camu fruit extract. Iron contributes to the normal formation of red blood cells and haemoglobin, regular oxygen transport and the reduction of tiredness.
ii) MULTI ESSENTIALS FIR WOMEN 50+. Take two tablets daily with meals. Designed to reflect the specific nutrient needs for women aged 50 and beyond, this is a high strengthmultivitamin with 28 different vitamins, minerals, and botanical extracts. Wherever possible we use the active and preferred vitamin forms to ensure the b ody can utilise these nutrients quickly and efficiently.
iii) BODYBIO BALANCE Oil product code BB-BO180-NL Take two soft gels daily, preferably with protein containing meal. Contains good balance of OMG 6 and OMG 3 fatty acids. BodyBio Balance Oil is the perfect blend of the essential fatty acids, omega -6, and omega-3 to give the brain a boost, improve digestive health, support immunity, liver function, and cardiovascular activity.
iv) BIO.REVIVE MUCIN+ 90 Capsule. Product code INVMUC90C. Take 3 capsules once daily. A phytonutrient formula to support the gastrointestinal membrane and increase mucosae’ and for preventing gastro-oesophageal reflux disease (GORD), as well as brown seaweed polysaccharides (Fucoidans) and Aronia berry extract, which have beenshown to increase Akkermansia spp. It is safe to use in cases of intestinal permeability, ulcers, and GORD.
ANTIOXIDANTS
i) AO DEFENSE one in the morning and one in the evening. Contains powerful antioxidants that combat the damaging effects of inflammation.
ii) C-RLA take two teaspoons (10 mL) daily (optionally in water), away from food.
Contains powerful antioxidants that combat the damaging effects of inflammation.
iii) TRI FORTIFY once a day before meals. Hold under the tongue for 30-60 seconds and then swallow.
* not enough ranges with your blood test results. Results without ranges are meaningless because they vary from lab to lab.
Also, I don't think you've said if you're on thyroid hormone replacement - levo or something. If you are, it looks like you would benefit from some sort of increase in dose.
* if you are having B12 shots, you also need to take a daily B complex. The B vits all work together, and need to be kept balanced. Chose one with just B vits, nothing else, and containing methylfolate, not folic acid, and methylcobalamin, not cyanocobalamin.
* one of the items on that list is a multi-vit. Multi-vits are not recommended on here for multiple reasons.
That one contains folic acid - see above; calcium - highly unlikely you need that; ashwagandha - that is something the some people tolerate others don't, should not be included in a multi! And it doesn't tell you the forms of B12 or vit D and K - never trust a supplement that doesn't give full details. What's more, it doesn't contain enough of anything to help a deficiency.
Also, it's very expensive for something of dubious value. I certainly wouldn't buy it no matter what an endo said. They don't tend to know much about nutrition, anyway.
The rest is stuff I know nothing about, so a bit of research is in order. But, I'm not sure why you would need two antioxidants. You can have too much of a good thing!
I can't imagine why anyone would ask you not to post the ranges! How every weird. lol
As of now endo has asked me to go to 125mcg as the TSH was 0.03.
Well, that's a black mark in his copy book! He should not be dosing by the TSH. Your FT4 wasn't even mid-range, so definitely not too high. Now it will be lower, and so will your FT3, so not much chance of you getting better on that.
I was pretty peeved when the endo said that. At my initial appointment they were very much ‘It’s not the TSH it’s the T4/3 that counts’ - then this time they ignore it! My results they had at that first appointment were from 1/7, they were based on 150mcg dose
T4 19.4 pmol/L 11 - 21.2 range
T3 5.4 pmol/L 3.1 - 6.8 range
TSH 0.07 mlU/L 0.27 - 4.2 range
My GP told me to drop to 137.5mcg which I did on 13/7. So these ones below are based on 8 weeks of reduced Levothyroxine!
I have decided to stop seeing the endocrinologist. Too many red flags. I am disappointed but this clearly wasn't the right path. I am going to address my iron levels as a priority, at least that's one area I can tackle. I'd rather spend my money on that than the supplement regime. So, I am organising an iron infusion. Going to order an appropriate B Complex too and go back to my 137.5mcg levothyroxine. Is there anything else you'd recommend?
Thank you so much. If the infusion is as fabulous as I hope, I'll be bouncing back here with a big grin in 6 weeks' time. Rather than feeling like a slowly rotting vegetable who can't stop yawning and looks like a zombie 🧟♀️ Here's hoping!
I suggest you also join an iron deficiency group. your transferring is low below threshold and it is now know ferritin under 30 ug/L is deficient please join an iron group asap. You need all these things to work together.
I have actually started to organise an iron transfusion with Iron Clinic. I have been considering it for a while but have not had a blood test detailing the necessary information in hand until now. My GP was happy with my haemoglobin results so she had no interest in offering iron supplementation, of any type. My Surgery has decided low iron is just 'normal' for me. Which is nice. The only time they were concerned was when my ferritin hit 5ug just before the onset of the pandemic. I've had multiple colonoscopies, gastroscopies, and no occult bleeding. I hadn't had a menstrual cycle since I was 39 due to DepoProvera and then cancer treatment. I am - it seems - an ENIGMA! As soon as ferritin goes over 12 they aren't interested. The most it got to was 53, with ridiculous amounts of ferrous fumarate a day (3 x 210mg tablets). The side effects were horrendous so I couldn't keep it up. Within a year it was 25 and dropping ever since. I tried gentler lower dose stuff but no help.
Is that when your ferritin is 50ug? May I ask if your hemoglobin was in range at that time? The last GP I saw said my hemoglobin was fine at 130 so not to be concerned. I hate having to argue for help from them all the time, it’s ridiculous.
Yes my haemoglobin was in range, ferritin was 10.1 range here was 10 - whatever, I saw a female consultant private and she put me over to her NHS by the time I got the 1st infusion I was at 5. She wrote me a letter saying to refer me back if it falls to 50 for another infusion.
Well done you, it’s really outrageous how you had to go private to achieve that, though. I’ve decided to just use the money I was going to use on the recommended supplements to pay for it. The benefit will at least be tangible - I think I can forgo my endocrinologist’s recommended tube of antioxidant with Vit C at £110 to fund 1/7th of the cost.
The infusion was so good for me, I need another but my ferritin is hanging around 80 ish. But I think a load of other things were on the bottom when last tested, I just get fed up hassling GP for blood tests.
My Surgery refused to order a specific blood test for my husband the other day as they couldn’t justify the risk to him. Of a blood draw. He offered to have it added on to another blood test already booked. They declined. So it wasn’t the risk at all. It was the cost. It was a test suggested by a hospital consultant so they said he’d need to be referred back to them and then have the consultant order it. All to not pay for this one test. Madness.
Wow, lovely high end sups. No wonder they are expensive as likely all science backed. Most look as if they are to heal gut issues.
Calcium D-Glucarate is nothing to do with calcium. I took it to help clear oestrogen dominance in my early days of being diagnosed. Quattroferrin is a blend of different iron to help your dire levels. High end Multivits are great, especially when you have numerous other sups to take but just ensure you are getting enough of everything to address any actual deficiencies. Thyroid issues tend to result in low Vit B’s and D.
I’ve also taken Bodybio Balance Oil before stabilised on thyroid hormones as thyroid antibodies were so high, but believe it good for any autoimmune-inflammation. Bio Revive Mucin I took for leaky gut but they hurt my tummy. And you have a lovely lot of much needed antioxidants. I have used Researched Nutritionals and they are an excellent brand although very expensive.
I would honestly say spend as much as you can afford on these preliminary sups, because as things start to heal you will find them tailing off. I’m presently clearing mould so taking a few more pills than usual but now a days my general sups regime consists of a multivitamin tablet and a Vit D drop. Thats it,! Oh and gut supports such as betaine when I need it.
Sorting my gut rectified an awful lots of other problems. Thyroid issues are notorious for creating awful gut issues and without a healthy functioning gut we become prone to absorption issues and poor conversion, etc.
I can well believe £500 for 3 months but he surely doesn't expect you to start them all at the same time? I would prioritise the list, stagger the starts and shop around 🤗 likely that some of them are only needed short term?
I have an endo from the list that 5 years ago suggested supplements that cost £1500, I went back and said I couldn’t afford that could he give me the top three. He had no idea how much they were going to cost.
He gave me discount codes to use on various sites, I would add I couldn’t tolerate some of the supplements so often ended up with unused ones as he swapped me to others.
I always apply the which three do you want me to take and it definitely limits cost and makes him justify what he’s chooses.
Yes, sorry, I know it was a terribly broad post. Yes, bloods for basics. I have B12 injections every 8 weeks so the resukt us always high for that. I already use L Methyl Folate 1000mcg and 100mcg Vit D3. Haven’t found an iron supplement I can tolerate, highly tempted by an infusion! These were some of the bloods -
Investigations 07/09/2023 8.50am
TSH 0.03 mIU/L 0.27 - 4.20
Free T4 16.6 pmol/L 12.0 - 22.0
Free T3 5.1 pmol/L
Thyroglobulin antibody 17.2 IU/ml
Thyroid peroxidase antibodies 142 IU/ml
Vitamin D 94.39 nmol/
White Cell Count 4.1 10*9/L
Haemoglobin 130.0 g/L
Platelets 237 10*9/L
RBC 4.8 10*12/L
Haematocrit 39.8 %
MCV 83.4 fl
RDW 48.0 fl
Neutrophils 1.7 10*9/L
Iron 8.5 umol/L
TIBC 69 umol/L
Transferrin saturation 12 %
Ferritin 18 ug/L
Whole Blood Potassium 1940 mg/l
Whole Blood Magnesium 37.8 mg/
SUPPLEMENTS
I include the blurb bits but only for completeness! Ignore as you wish?!
i) GUTTAE PEPSIN 5 drops three times a day before meals increasing very slowly to 20 drops three times a day before meals. Stop if you experience a warm feeling & reduce dose to one below until sensation disappears.
(ii) GLUTEN DPP IV – take one immediately before a meal. This contains a comprehensive set of digestive enzymes. The intention is to aid digestion and target symptoms of gas, bloating, and altered bowel movements (constipation or diarrhoea).
(iii) PERM PLUS 2 capsules three times a day; 20mins before a meal for 2 months. Permplus contains ingredients to help reduce inflammation. It also has a specially formulated brand of glutamine that helps to reduce the adverse conversion to ammonia (which can be toxic).
(iv) COREBIOTIC SENSITIVE one tablet twice a day at least 30 min before meal.
(v) MICROBINATE: kills pathogens/bad bacteria. (Take for total of 2-4 months). Start this after the antibiotics at a different time to probiotics. First week: 1 tablet twice daily,away from food. After the first week: 2 tablets twice daily, away from food.
(vi) BUTYFLAM (Butyrate Coated) 2capsules three times a day, ideally 20minutes before meals . Butyrate might help to reduce inflammation.
i) CALCIUM-D-GKUCARATE. Take one three times a day with meals. Calcium D-Glucarate is a combination of glucaric acid bound to calcium. Glucaric acid is a naturally occurring chemical found in our bodies and in certain fruits and vegetables, albeit, in very small amounts. Calcium D-Glucarate supports the glucuronidation pathway of detoxification.
QUATTROFERRIN® 21 60's. Product code BG-051. One capsule daily taken with plenty of liquid. Best on an empty stomach or one to two hours after a meal and 2 hours apart from other supplements. Biogena QuattroFerrin®21 - with four different iron compounds in the unique QuattroFerrin® blend, practically complemented by vitaminC from camu camu fruit extract. Iron contributes to the normal formation of red blood cells and haemoglobin, regular oxygen transport and the reduction of tiredness.
ii) MULTI ESSENTIALS FIR WOMEN 50+. Take two tablets daily with meals. Designed to reflect the specific nutrient needs for women aged 50 and beyond, this is a high strengthmultivitamin with 28 different vitamins, minerals, and botanical extracts. Wherever possible we use the active and preferred vitamin forms to ensure the b ody can utilise these nutrients quickly and efficiently.
iii) BODYBIO BALANCE Oil product code BB-BO180-NL Take two soft gels daily, preferably with protein containing meal. Contains good balance of OMG 6 and OMG 3 fatty acids. BodyBio Balance Oil is the perfect blend of the essential fatty acids, omega -6, and omega-3 to give the brain a boost, improve digestive health, support immunity, liver function, and cardiovascular activity.
iv) BIO.REVIVE MUCIN+ 90 Capsule. Product code INVMUC90C. Take 3 capsules once daily. A phytonutrient formula to support the gastrointestinal membrane and increase mucosae’ and for preventing gastro-oesophageal reflux disease (GORD), as well as brown seaweed polysaccharides (Fucoidans) and Aronia berry extract, which have beenshown to increase Akkermansia spp. It is safe to use in cases of intestinal permeability, ulcers, and GORD.
ANTIOXIDANTS
i) AO DEFENSE one in the morning and one in the evening. Contains powerful antioxidants that combat the damaging effects of inflammation.
ii) C-RLA take two teaspoons (10 mL) daily (optionally in water), away from food.
Contains powerful antioxidants that combat the damaging effects of inflammation.
iii) TRI FORTIFY once a day before meals. Hold under the tongue for 30-60 seconds and then swallow
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)
On T3 - day before test split T3 as 2 or 3 smaller doses spread through the day with last dose 8-12 hours before test
Rather than just taking folate, we always recommend a good quality daily vitamin B complex
This can help keep all B vitamins in balance and will help maintain B12 levels between injections too
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
MULTI ESSENTIALS FIR WOMEN 50+. Take two tablets daily with meals. Designed to reflect the specific nutrient needs for women aged 50 and beyond, this is a high strengthmultivitamin with 28 different vitamins, minerals, and botanical extracts. Wherever possible we use the active and preferred vitamin forms to ensure the b ody can utilise these nutrients quickly and efficiently.
is that this one?
So this is a vitamin B complex with extras …..so could take instead of vitamin B complex
I would have to chew it up or break into powder first
• in reply to
The iron patches are interesting. I don't eat dairy, I do eat gluten, I do eat meat, 5 days a week, red meat 2-3 of those.
• in reply to
God, sorry, keep hitting reply too soon aaaaargh. I did my bloods after an overnight 12 hour fast, just water, Levothyroxine 24 hours prior, around 8.30am - I took 125mcg. I was alternating 150 with 125 at my GP and endo suggestion to achieve 137.5 mcg. This was a drop from 150, beginning the drop in July. No T3, though endo has mooted it.
Sorry to hear this. It does seem excessive. I would be asking for a full explanation and the ones to prioritise. If nothing else to put them all in place all at once you will not know what is doing what. Therefore know which are really helping. The other thing to do is cross check prices.... Are you buying direct from him or on the net. The latter is probably cheaper.Surely some of it can come from a healthy diet?
They are from three different suppliers, which they provide discount codes for, and they prefer you to use them as they have experience with the quality/formulation. They do say you can use others though, its just a matter of my working out what’s in each 😶
The plan is to space them 2 days apart, and some are follow on’s from others. The aim apparently is to use them over this 3 months, get stable so to speak, with a plan to then get the necessary from food sources going forward.
That sounds good CoffeeTogo. If you are deficient then it's good to get vits mineral optimum as that will help you with utilisation of thyroid hormones.I think you may have to consider that you are investing in appointments so follow through makes sense. Still worth comparing other products though.... but always use reputable brands. This is because vits minerals are graded AtoD. D being a level that you are unlikely to be able to absorb at all. A grade being the most absorbable. This is why there is such a divergence in price. And in fairness why they are recommending theirs. Unfortunately companies are not required to divulge the grading level of their vits on product ingredients. Maybe SeasideSusie can help with this as I know she's very knowledgeable on this area and maybe able to recommend equivalent brands that are equally good? Then you can compare prices like with like.
Thank you. I’m think (probably!.) going to add everything up and then decide whether to go the whole hog or ask which the Dr considers most important. I assumed there would be some considerable expense but when it started piling up I was taken aback a bit! The Dr doesn’t get a commission or anything iffy but I was surprised at the prices. When the Dr ordered the tests, they warned me of the prices and that softened the blow ( happily I was covered for them). But this time I wasn’t quite so prepared!
Awww it is a lot, especially when you are poorly. Is it worth asking if any of these could be supplied by the NHS, via GP? Asking for the priorities on the list is a good idea.
I’d be inclined to take this diagnosis/results and asked to be referred to a NHS Gastroenterologist who will probably guide you to a Dietitian /nutritionists for better guidance on dietary areas.
The endocrinologist can refer or at least ask your GP to, based on the information given, ask consultants to write to your GP.
It’s great you’ve identified area which may help you.
SIBO can be helped with a short term diet eg low Fodmap with the help of nutritionist or even NHS dietitian as it can be hard to deal with SIBO… antibiotics are involved by some practitioners too..
Maybe another professional who deals with these areas more often than an endocrinologist can maybe pinpoint a better treatment plan specific to your needs rather than throw everything at you to take all at once.
The endocrinologist has suggested I adopt low FODMAP but consider deferring that until I have established this supplement regimen. They are aware of my former eating disorder (restricted eating, over exercising my BMI was 18) and that my weight literally doubled after cancer diagnosis and treatment (plus the depression that followed). They have said involvement of a dietitian might be wise.
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And the first question I would ask is: did you have any nutritional testing - specifically vit D, vit B12, folate and ferritin, the basics? 
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