I’m relatively new here, discovered this lovely community recently and have been going through a couple of posts to increase my knowledge.
I was diagnosed with hypothyroidism last August by a Gynaecologist after my husband and I were referred for fertility reasons. I know the road to getting this condition under better control can be a long one but I’m feeling so overwhelmed and down about it at the moment. I’ve never had a full thyroid blood panel as my GP just refuses so I’ve only got my TSH readings so go by. Here they are from August till now:
25.7 - prescribed 25mcg of Levo
21.10 - 3rd Oct - asked to increase Levo to 50mcg
3.36 - 2nd Dec - asked to increase Levo to 75mcg
0.07 - 17th Jan - asked to decrease Levo back to 50mcg
25 - 12th Mar - asked to alternate days to achieve dose of 65mcg so taking 50mcg and 75mcg on alt days.
Honestly I just despair at my last result after all those months of lowering. I’m currently on an in between dose as my GP said 0.07 was too low so I take 50mcg of Levo one day and 70mcg the next. I realise I don’t have the full picture as I don’t have any other blood results so go from so will have to get them done privately. The Gynaecologist did request TPO bloods once and they came back around 77 so I’m thinking this may mean I have Hashimoto’s also?
I’m thinking of looking at going private as I feel I won’t get the care I need from my GP. I don’t feel like he really understands the condition as he told me himself they only treat the blood results and would probably still have symptoms so basically just put up with it. Lately I’ve just been feeling so exhausted it’s becoming such an effort to get anything done.
Do you guys think I’m rushing too fast to go privately or have you got good experiences of this? Also looking for recommendations of someone, I’m in South Wales so any good experiences welcome by private message of course.
My husband and I are just desperate to start a family and it just feels like it’ll never happen at this rate.
Thank you so much for taking the time to read this enormous post. It’s been really nice to offload actually
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Getting our medication optimal and our symptoms properly treated is a long, long haul. You have successfully passed the first two tests - you have had levo prescribed and found this forum
Many (most?) doctors don't understand anything much about being hypo - it's barely covered in their training and they are told that TSH is everything. Sadly, most endo's know very little more - the vast majority are diabetes specialists.
So I would hold off going private just yet - but get a full range of blood tests done privately - TSH, free T3, free T4, all thyroid antibodies, ferritin, folate, vit D and B12. Take your blood early in the morning, 24 hours after taking your levo. One you have them, post your results here and ask for help. Start optimising your key nutrients if necessary.
Then I'd go back to your GP [ideally take someone with you, preferably a man - for some reason they take us more seriously then] and have an informed (on your side) conversation about how your free T3 and free T4 are. These are the thyroid hormones. They're the thing that matter. TSH is just a message from your pituitary to your thyroid.
Thank you for taking the time to reply. Honestly I’m blown away by this forum and how helpful and knowledgeable the people are. Really gives people like me hope and an outlet when things feel a bit too much. I think I’m about 4 weeks after starting my adjusted dose of Levo so thinking I should wait another 2 weeks before getting the private bloods done? It’ll really be something to see a full picture of what’s going on so I can start the long journey to tackling it
Yes, give it 6 to 8 weeks. Read some of SeasideSusie 's replies to other posts on how best to take your blood at home [click on her name to see her posts and replies]. Good luck x
Looking at your TSH results it would seem that you were put on Levo when your TSH was 25.7, you gradually had your Levo increased, your TSH gradually lowered until it reached 0.07, your GP lowered your dose of Levo and now your TSH has gone back up to 25?
Would you be able to edit your post and add dose of Levo you were on at the time of the test and what it was changed to so that we can fully understand what your GP has done.
Always please include the reference range, these do vary from lab to lab and even the same lab does change the range occasionally. For example:
Date at diagnosis
TSH xx (range yy-zz) - prescribed XX dose of Levo
Date on XX dose of Levo =
TSH xx (yy-zz) - dose increased to YY
Date on XX - dose of Levo =
TSH xx (yy-zz) - dose increased to YY
etc
Your TPO result of 77 is probably over range, but again to be absolutely sure we need to see the range. However, it does suggest Hashi's which is where the thyroid is attacked and gradually destroyed. Fluctuations in symptoms and test results are common with Hashi's.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.
You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily is said to help reduce the antibodies, as can keeping TSH suppressed.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. It's essential to test Vit D, B12, Folate and Ferritin and address any problems. You are welcome to post these results, including reference ranges (plus units of measurement for Vit D and B12), for comment and suggestions for supplementing where necessary.
It would be a good idea to get full thyroid/vitamin testing and you can do this with one of our recommended labs. Most popular here are:
Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:
For the fingerprick test:
Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)
Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.
B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.
Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)
Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.
Only fingerprick and "arrange your own blood draw" tests are available at the moment, they are not offering blood draw at clinics or home phlebotomy.
TIPS FOR DOING FINGERPRICK TEST
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.
* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.
Sample needs to be sent the day it is taken to arrive at the lab the next day.
When doing thyroid tests, we advise:
* Book the first appointment of the morning, or with private tests at home no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If we are looking for a diagnosis of hypothyroidism, or looking for an increase in dose or to avoid a reduction then we need TSH to be as high as possible.
* Fast overnight - have your evening meal/supper as normal the night before but delay breakfast on the day of the test and drink water only until after the blood draw. Eating may lower TSH, caffeine containing drinks affect TSH.
* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.
* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).
These are patient to patient tips which we don't discuss with doctors or phlebotomists.
Also, it's important to take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.
Wow thank you for all that very useful info! That really does help! I’ve updated my results but unfortunately I don’t have copies of the results so don’t have the ranges, another learning opportunity there I feel. I will try and request copies so I have them for future.
I was unsure of the difference between medichecks and blue horizon so that’s great to know the tips you’ve listed there!
0.07 - 17th Jan - asked to decrease Levo back to 50mcg
Those show us that your GP is following protocol, good that he's testing regularly, and obviously on 17th January your TSH was suppressed which freaked your GP out so he decreased your Levo, but he really should have got FT4 done, and FT3 if possible, because those are our thyroid hormone levels (TSH is not a thyroid hormone, it's a signal from the pituitary for the thyroid to make hormone if it detects there's not enough). It's the FT3 level which tells us if we're overmedicated.
25 - 12th Mar - asked to alternate days to achieve dose of 65mcg so taking 50mcg and 75mcg on alt days.
This result should have rung alarm bells with your GP - a small decrease and your TSH shoots up again!
Don't ask your GP for copies of your results, they don't like to give them, just as the receptionist for a print out, we are legally entitled to copies of our results free of charge and without question as long as a doctor has seen them, although at my surgery the receptionist has to ask permission from a GP before handing them over.
Yes I have a feeling he may not be too happy if I ask so will definitely be asking the receptionist. My last conversation with my GP I asked if I could have a full thyroid check in my next blood test and he just point blank refused. It’s difficult, I find it hard to fight my corner as I feel embarrassed. I just feel like this whole thing is affecting more than just my thyroid health at the moment and I just want to try and fix what I can. I’ll be ringing my GP again on Thursday and see if they will accept the private blood test results as I doubt I’ll be able to go in and get the one check he’s asked for in a few weeks time. Not sure how that’s going to go down.
As you say when I saw my TSH rise so dramatically I was really shocked and I think it’s completely knocked me for six when my GP didn’t seem phased. He hasn’t referred me to an endo yet either which is why I was thinking of looking privately for more help.
When things get back to normal and we can get face to face appointments again, it may be worth taking someone with you to your appointment, a partner or supportive friend. It's amazing what difference it makes having a "witness" in with you. If a partner, they can support you by emphasising how your condition affects your life and your relationship.
As for seeing an endo privately, choose very carefully. They are all NHS trained and most work within the NHS as well, this means that most just follow the NHS guidance and you may be no better off and your purse may be worse off. There are some good ones out there but you'd need a recommendation.
You can send for the list of thyroid friendly endos from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
then ask on the forum for feedback by private message on any that you can travel to.
Yes I’ve already had the list as I saw a post that mentioned it so thought I’d get it just in case. I’m thinking what I may do is get the bloods done, see what they’re like and probably post them on here to get some advice too. Hopefully if we can, take my husband to the GP with me as you say. If there are no face to face then I’ll have to try again I’ve the phone. It’s hard to know what to do for the best isn’t it when it comes to going private. I can see some private practitioners look at different medication etc which I would be open to but as you say it all comes with a cost.
ALWAYS get FULL thyroid and vitamin testing BEFORE considering seeing any thyroid specialist
Your antibodies look high ...though we need the range to be certain
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
With Hashimoto’s, TSH frequently hops around, but medics should be looking at Ft4 and Ft3...not a TSH
About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Hashimoto's frequently 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 intolerance. Second most common is lactose intolerance
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find strictly gluten free diet reduces symptoms, sometimes significantly. Either 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying strictly gluten free diet for 3-6 months
If no noticeable improvement, reintroduce gluten and see if symptoms get worse
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
Thank you for taking the time to reply to my post :). I’m definitely going to order a full thyroid bloody panel privately as I don’t think I have a hope with the GP. Think I’ll then post the results on here to get some advice as I’ve not had a full test before. I’m going to request my recent blood test results be printed too so I can see the ranges, I didn’t realise the importance of this before having that advice on here. I’m really open to doing anything to improve the effects of the condition. Hoping one day I can reduce my symptoms and be healthy enough that it doesn’t inhibit my fertility.
Thank you for that link! I’ve just had a quick read and atleast there is some hope that once my levels become optimal I may stand a good chance. I’ll definitely be back with more info on my results as soon as I have them
Welcome to our forum and you don't need to go private yet. I would advise you become a member of Thyroiduk.org.uk who is the Organisation behind this forum. They also have a conference every couple of years and Lyn Mynott - deals with trying to change attitudes about the diagnosing and prescribing for those who have a dysfunctional thyroid gland.
These are guidelines and many women find they have difficulty in becoming pregnant or having miscarriages.
This is the method to get the most out of blood tests for your thyroid hormones.
1. The earliest blood test, fasting (you can drink water) and allow a gap of 24hours between last dose of levo (or whatever thyroid hormones you take) and take it afterwards. This method helps keep the TSH at its highest and may prevent doctors adjusting thyroid dose.Many doctors seem to believe that if our TSH goes below 1 that we're on too much replacement doses (or have become hypERthyroid and adjust dose.
T4 and Free T3 (if tested ) have to be towards the upper part of the ranges.
Always get a print-out of your results with the ranges for your own records and post if you have a query.
All vitamins/minerals have to be optimal too, i.e. B12, Vit C, iron, ferritin and folate.
Thank you for your reply and brill advice. I think I’ll be putting a pin in going private after all the feedback I’ve had today. I need to know a little more about my thyroid health before moving down that route. I’ve ordered the thyroid ultravit test on Medichecks so will be back with the results once I do the test etc. It’s so lovely to have so much support from this group. Sometimes it’s quite lonely when no one around you knows how it feels if that makes sense
As postal service is currently extremely slow only do test early on Monday or Tuesday morning and post back using guaranteed tracked special next day delivery (currently taking 48 hours)
Oh gosh I wouldn’t even have thought about that! So is the postage included in the test or do I arrange that? Sorry if it’s a silly question. I’m hoping my GP will accept the private tests because they’re not offering blood tests at the moment but I don’t want to wait until normal practice resumes.
Under normal circumstances postage is included for standard first class post.....but it’s your responsibility to get test returned in good time ....many people do always pay extra for tracking
currently it’s especially likely to mean you need to pay extra for special delivery....because post currently seems very slow
Yes I think that’s probably wise! Well worth the extra few pounds to make sure the tests can be run!! And I hadn’t even noticed the brand of tablets I’m on. Current I have Northstar but looks like I once had Teva
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many, many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients....so it’s a Marmite Brand
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
List of different brands....note Teva is also in Northstar 25mcg box
This is so interesting. I need to pay attention and see if the brands are making a difference to how I feel. I can’t believe how much there is to learn! So grateful for all the help on here
Just so that people don't think of it an a new and (relatively) untested product, Aristo is long-established in Germany. - whence it comes.
We have had some of the few people who have, so far, received it report that they were fine on it. That does not mean everyone will be, but we can hope.
Thanks both for the replies. I’m actually due a repeat prescription today so let’s see what that brings. Hopefully it’ll be the same as what I’ve got now (Northstar) so I can see how I feel on it. However with my levels not being optimum yet I guess I won’t really know
Hi SlowDragon hope you’re well yes got my testing kit ready to take a sample in a couple of weeks. Be posting my results on a new thread then for some more helpful advice
A majority of our members have had the 'training' many doctors do not have, due to the fact that they may have remained undiagnosed for a long time (I'm one) who have to diagnose themselves.
I had never had anyknowledge of hypothyroidism, hadn't heard the word before, or knew anyone who had it. The fact that the doctors/specialists I saw had no clue either of what my problem was is really shameful.
Once upon a time, we were all diagnosed upon our clinical symptoms alone and given a trial of NDT (natural dessicated thyroid hormones) first given from 1892 until around the 60's when Big Pharma wanted a slice of the cake. Gradually, they've removed NDT and replaced with levothyroxine. (One of TUK's Advisers - now deceased - stated that it was due to Big Pharma's 'rewards' to doctors to prescribe levo instead of NDT which has all of the hormones a healthy thyroid gland would produce. T3 has also fallen from being prescribed in the UK.
Take your thyroid hormones on an empty stomach, usually when we get up with one full glass of water and wait an hour before eating. Or at bedtime - ensure stomach is empty.
Miss night dose if having a blood test next a.m. and take afterwards and take night dose as usual the same day. Miss a.m. dose if having a blood test and take afterwards.
Also ask for B12, Vit D, iron, ferritin and folate to be tested. Everything has to be optimal.
Yes I’ve seen a lot of people have mentioned they feel a lot better on NDT, makes sense after what you’ve said if it contains all the hormones we would make naturally. I can see why people pay privately to have it if it makes them feel better, just such a shame tang it comes to that and are unlikely to get on NHS due to cost etc
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