Hi my name is Sarah Hardaker im 49 married with 4 children,i was diagnosed 8 years ago after having bloods done when i felt rotten,in all honesty id wished id not bothered with sergery and RAI treatment,I also had a goitre that was removed,I gradually put weight on over the 8 years going from a size 14 to 22/24 Im incredibly unhappy and just want to be fit and healthy again,i feel life is passing me by and im not myself anymore 
Believe ive tryed every diet in the book! Even starving myself,tes drastic i know! I rang the doctor and recently had my bloods done again,for years i think ive been under medicated which after doing alot of research that my T4 levels are significantly low (9.8) should be around 15 for healthy matabolism,No-one listens,im at a loss,hoping someone somewhere may have some good news or give me some solid advice in way to go next?? Look forward to recieving your advice and messages,love n peace Sarah.
Still battling with the docs 7 years on! :-( - Thyroid UK
Still battling with the docs 7 years on! :-(
Welcome to the forum Sarah,
Can you post your recent blood tests with ranges (as labs differ) so members can give better advice?
What thyroid medication are you taking? Have you ever had your antibodies tested? Do you supplement any vitamins?
You will get lots of great advice from this forum; I’ve learned so much from reading posts and following advice from members....far more than from any medics I’ve seen!
Hi,thank you for replying 
Im currently taking 100mh Levothyroxine and 1000 mg vit D3,thats it.I cant recall ever having my antibodies done? I asked the doctor for a full thyroid panel but all i got was my THS and T4 results,no others,No further action will be taken,I stressed to the receptionist but she said I was normal and thats it,so im at a loss what to do next?? thanks Sarah .
You are legally entitled to all results from GP, so don’t feel bad about asking for a print out. As GPS often only test T4 and TSH many here use private tests. If you use Medichecks they are often discounted on a Thursday- so worth a look. Antibodies will show if you have Hashimotos. Also really worth checking ferritin, folate, Vit D as if you have Hashimotos you may not be absorbing these well & may need to supplement to get levels optimal. I check both my thyroid & key vitamins with one finger prick test on Medichecks, although other members use different labs. Please don’t supplement without checking your levels though. Also, keep posting; we are here to support one another.
Thankyou for your reply 
Thinking of going private,as not getting anywhere with the doctors,If i do go private and have the results that i need to up my levo dosage will the doctor agree with the findings and up my medication or is that only what an Endo can do? My endo is useless! TIA
Yes they should, although some GPS like to re run tests on NHS. Definitely do own test before you see a private endocrinologist, as they will only ask for this.
I’m sure you will get a recommendation for a more sympathetic/ proactive Endo if you ask for list from Thyroid UK. Alternatively, if you say which city you live near members can private message recommendations near you.
First step is to get FULL thyroid and vitamin testing done
Come back with new post once you get results
Members can advise on next steps
Likely to need dose increase in levothyroxine
Important to get vitamins to GOOD levels
NHS only tests and treats vitamin deficiencies
Frequently necessary to self supplement to improve vitamins to optimal levels
Ah, don’t you just love it when receptionists become doctors? Not! “In range” results are often not “optimal” results. It’s not the receptionist’s call!
What were your actual results, with lab ref ranges if you have them? It sounds like your FT4 is too low if it’s 9 point something but we’ll know for sure if you can post the results and lab ranges.
That will mean that you’re on too low a dosage of levothyroxine. When you’re chronically undermedicated your gut stops absorbing nutrients so well, which results in low iron levels, low B12, low folate, low Vit D—you get the picture. It leads to a whole host of secondary problems and makes you feel dreadful.
Happily, you’ve found this forum. Before you spend money on a private Endo (no guarantee they will help, I’m afraid—some will, some won’t!), see if there’s anything we can suggest that will help you.
And if you do decide to go down the private route, here’s how to get a list of Thyroid UK’s recommended doctors. thyroiduk.org/help-and-supp...
Welcome to the forum
How much levothyroxine are you currently taking
When were thyroid and vitamin levels last tested
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially after RAI
Ask GP to test vitamin levels
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)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
NHS easy postal kit vitamin D test £29 via
guidelines on dose levothyroxine by weight
Even if we frequently don’t start on full replacement dose, 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
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Many people after RAI need addition of small doses of T3 prescribed alongside levothyroxine. This can only be initiated by endocrinologist (due to cost)
But BEFORE considering adding T3, we must get levothyroxine dose fine tuned and all four vitamins optimal
Frequently helps to be on strictly gluten free diet.
Ask GP for coeliac blood test BEFORE considering trial on strictly gluten free diet for 3-6 months
Welcome to our forum and I am sure you will get helpful responses. It is a big learning curve for those of us diagnosed with hypothyroidism and the pity is that the majority of GPs (sometimes even endocrinologists) don't have sufficient knowledge to enable us to recover our health. Members on this forum will give you advice that will help relieve your clinical symptoms.
The following link is from the Association behind this Healthunlocked forum (Thyroiduk.org.uk) and it is those few who are doing their best to change the attitudes of the 'professionals' who don't seem to be well-educated in helping patients with a dysfunctional thyroid gland to recover their health. If you'd like to become a member- this is the link The more members the stronger our voice.
This is the method to use when getting a blood test for your thyroid hormones so that you get the best results: -
the earliest possible blood draw - probably need to make appointent weeks ahead. It is also a fasting test but you can drink water.
When you take thyroid hormones, it should be as early as possible (stomach is empty) and take with one full glass of water and wait anhour before eating.
If having a blood test, blood draw should be at the earliest possible but don't take dose until after test as that will give you the best results and may prevent doctor reducing your dose.
Some people prefer a bedtime dose, in that case miss this dose and take after test and night dose as usual.
Also request B12, Vit D, iron, ferritin and folate. Everything should be optimal.
Always get a print-out of your results from the doctor for your own records and post if you have a query.
Don't worry too much about 'weight' as it is probably due to not being on a sufficient dose of thyroid hormones. There are thousands of, mainly women, who get weight gain but you may be able to lose when you're on an optimum dose. Optimum is usually TSH 1 or lower, and a Free T4 and Free T3 in the upper part of the ranges. The frees are rarely tested but you might like to get a private home blood test. If you do make sure your hands arms are warm.
Request B12, Vit D, iron, ferritin and folate at the next blood test.
Unexplained weight gain is the commonest query on the forum:
Hello Sarah and welcome ;
I'm with Graves Disease diagnosed in 2003 and had RAI thyroid ablation in 2005 and discharged back out in primary where I was dosed and monitored to have my TSH be in range, irrespective of how unwell I was becoming and prescribed anti depressants when I asked for more help.
I found myself on here looking for answers around 6 years ago, and with some reading and rereading I'm now so much better now and have my life back and it does somewhat become confusing as to why there seems so little help in UK mainstream medical.
First and foremost we need to see a full thyroid panel and if your doctor can't run this for you there are private companies listed on the Thyroid uk website who can even arrange a nurse to visit you and draw your blood, and initially we need to see TSH, T3, T4, antibodies, inflammation, ferritin, folate, B12 and vitamin D :
Once with the results and ranges people better able than me will talk you through the results and advise you on your next steps back to better health.
There is much to read and understand and you do need to become your own best advocate. Thyroid uk is the charity who support this amazing forum and their website includes many interesting sections and articles.
You'll also pick up information from just reading other peoples posts and it does register, and soon you'll be turning round much of this around for yourself.
There is a book written by a doctor who has hypothyroidism that I found particularly helpful. Barry Durrant - Peatfield writes in an easy to understand, sometimes insightful manner, and his book - Your Thyroid and How To Keep It Healthy is relevant as we do need to know what this tiny but very major gland does so that we can try and compensate accordingly.
Thank you Ive learned so much in just a few days,unfortunatly my doctor only asked for the yearly THS and T4 even though i stressed i still didnt feel right,so down the private lane i go,if you can suggest the one that you think is the best/right private test for me,(theres so many?) Many thanks Sarah.
Hey there Sarah:
To reply to someone personally you need to actually press " their reply button " below their post to you : otherwise they are not notified you replied and you may feel ignored.
I just happened to come back here as you pressed the like icon which alerts my alert icon.
It'll all fall into place don't worry :
Well, I think it also depends where you are in the country - I use Medichecks as I prefer a nurse home visit to draw my bloods, and they were, 5 years ago, the only company offering this service way down here in Cornwall.
I think we need a full thyroid panel as low vitamins and minerals simply compound the effectiveness of any thyroid hormone replacement you maybe taking, so I think you need a blood draw.
Again, depending on where you live, I've read there are better facilities, and blood test clinics more easily found, and I've read some surgeries do offer to draw the bloods for some patients, though guessing with all that's going on currently, options may not be as available.
Thank you so much its muchly appreciated the advice
Just to add :
A fully functioning thyroid would be supporting you on a daily basis with trace elements of T1, T2, and calcitonin plus a measure of T3 - synthetic Liothyronine said to be at around 10 mcg plus a measure of T4 - synthetic Levothyroxine said to be at around 100 mcg.
T4 is a storage hormone and your body needs to be able to convert into T3 which is the active hormone that the body runs on. T3 is said to be about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function.
Your ability to convert the T4 into T3 can be compromised by low vitamins and minerals, but also inflammation, any physiological stress ( physical or emotional ). depression, dieting and ageing, so although we can't turn back the clock, there are some things we can do for ourselves, and yes sometimes it can look like a vicious circle especially if you have a doctor who keeps putting the onus back on you.
As you will see from the above by loosing your thyroid you have in fact lost your own thyroid production of T3 and personally speaking I just think it's common sense that both T3 and T4 be on the patients prescription for if, and probably when both these vital hormones will need to taking to restore thyroid hormone balance an at a level high enough to be acceptable to the patient.
And put another way - you have in effect been down regulated by around 20% of your overall wellbeing by not replacing the T3 : and the body will initially try and compensate, and work harder for you, but ultimately you are being pulled down even further.
The thyroid is referred to as the body's engine, so imagine a car running on only 80% petrol - it's not going to run as far as it did, and if you put accelerator pedal down you may not find any your va va voom anymore.
The thyroid is a major gland responsible for full body synchronisation including you physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Some people can simply get by on T4 only, some people simply find after a few years, T4 doesn't seem to work as well as it once did, and some people simple need both these essential hormones dosed and monitored independently to restore health and well being.
In the UK in primary care doctors can only prescribe T4 - Levothyroxine.
They used to be able prescribe other thyroid hormone options, namely T3 and Natural Desiccated Thyroid, which is pig thyroid dried and ground down into tablets referred to as grains, and which was successfully used for over 100 years to treat hypothyroidism and contains all the same known thyroid hormones as that of the human gland,
Having been refused both NDT and a trial of T3 by my surgery and hospital I decided to self medicate as the stress caused simply exacerbated my symptoms.
If you can find some time start reading up, as the pieces will fall into place just like a jigsaw, and you too can help yourself get back to where you were, and where you felt better and more like your " you " .
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